Living With Peace and Confidence

MJHS was founded in 1907 by The Four Brooklyn Ladies based on the core values of compassion, dignity and respect. With the help of charitable support, they provided poor, elderly members of the community with quality health care and a safe place to live in their times of greatest need.

From a small building among the tenements, MJHS has become one of the largest and most innovative charitable not-for-profit health systems in the region.

Living With Peace And Confidence Patient And Family Guide Book

Today, our programs and services for people of all religious, cultural and economic backgrounds include: home care, hospice and palliative care for adults and children; an award-winning center for rehabilitation and nursing care, Menorah; health plans for at-risk members of the community; and the research-based MJHS Institute for Innovation in Palliative Care.

As a not-for-profit organization, many of our programs and services are made possible, in part, through support to the MJHS Foundation. The generosity of grateful families, private and corporate donors, grants, as well as our own employees, support our specialized services not reimbursed by government programs or private insurance.

To learn more about MJHS or to support our not-for-profit services visit www.mjhs.org

Home Care | Hospice and Palliative Care | Menorah Center for Rehabilitation and Nursing Care Elderplan/HomeFirst | Institute for Innovation in Palliative Care | Foundation www.mjhs.org | 1-855-385-8930

FOR IMMEDIATE ASSISTANCE PLEASE CALL

(212) 649-5555

Stay in touch with us! @MJHS01

Notes:

Notes:

_____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________

_____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________

HA.17.v1

Our Promise to You Choosing hospice care is a thoughtful decision. Thank you for choosing MJHS Hospice and Palliative Care at this important time in your life. Our mission is to provide the necessary support and care to assist you in living each day as comfortably as possible in the company of your family and friends.

Through advocacy and education, we are here to help you and your loved ones feel confident in understanding what is happening in the course of your illness so that all of your physical and emotional needs can be anticipated and respectfully addressed.

Our care and support is based on enhancing quality of life and preserving dignity and self-worth. Our focus is: • Providing you with a pain- and symptom-free experience, when possible.

• Emphasizing your decisions regarding your Plan of Care.

• Advocating for your wishes regarding care and treatment.

•A ssisting you in your desire to stay at home, whenever possible, under the care of family, friends, and visiting professionals.

We are committed to providing compassionate, expert care, offering peace of mind and providing comfort. We want to understand what is most important to you and your family so you have the peace of mind that you are receiving the best possible care in order to manage your physical, emotional and spiritual comfort.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

2

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

Scope of Hospice Services - Your Initial Plan of Care Page 4

Section

Planning in Advance for Your Medical Treatment

Section

Page 19

Notice of Privacy Practices Page 33

Table of Contents

1

Alternate MJHS Care Settings - Managing Uncontrolled Symptoms - Medication Care Kits Page 10

Patient and Family Resources

Section

2 3

Section

4

Patient and Family Bill of Rights Section - Notice of Non Discrimination - Language Assistance Page 38

Medication and Infection Control Page 44

Safety in the Home Page 48

What to Expect from Your Home Health Aide Page 54

A Caregiver’s Guide Page 56

Contacting Us Page 68

5

Section

6

Section

7

Section

8

Section

9

Section

10

SECTION 1

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 1

Scope of Hospice Services The hospice care you are electing includes a variety of services to be provided based on your individualized needs. As part of your hospice Plan of Care, the hospice team will determine the frequency of home visits, services and level of hospice care needed as discussed and developed in collaboration with you, your caregiver(s) and family. These services may include: • Visits by members of the hospice Interdisciplinary Team: Hospice MD, Registered Nurse, Social Worker, Spiritual Care Support, Creative Arts Therapist, Home Health Aide and Volunteers.

• Medical and nursing management of the physical symptoms of your illness.

• Emotional and spiritual support / counseling for you and primary caregiver(s).

•M edications, medical equipment including oxygen, supplies and durable medical equipment.

• Physical therapy, occupational therapy, respiratory therapy, speech language pathology, dietary counseling and laboratory services, as appropiate and with Hospice MD approval.

Hospice services do not take the place of the care provided by family members, friends, significant others or nursing home staff (if a nursing home is your place of residence). Hospice care provides specialized professional support and guidance. If you reach a point during your illness where you require a person to stay with you at all times, and your family and/or caregiver are not able to provide such care, our hospice staff will work with you to determine eligibility for assistance or to transfer you to an appropriate level of hospice care. You may need to use personal financial resources for additional care at home or if transfer to a hospice residence or skilled nursing facility is needed.

Medicare Part A sets forth the criteria for the hospice benefit, and most other insurers also follow Medicare guidelines. According to these guidelines, hospice care is provided in specific benefit periods: 1st Period

2nd Period

3rd and all subsequent periods

90 Days

90 Days

60 Days

For each benefit period, MJHS Hospice and Palliative Care (MJHS-HPC) is responsible for completing a medical certification or recertification process, which determines your eligibility for continued hospice care. Eligibility for hospice care will be determined prior to the beginning of each new hospice benefit period.

4

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

Levels of Hospice Care There are four levels of hospice care available. Your level of care will depend on your needs and may change over the course of your treatment: 1. Routine Home Care 2. General Inpatient Care 3. Continuous Care 4. Respite Care Routine Home Care—This care is provided in the comfort of your own home...whether it is a private residence, assisted living facility or skilled nursing facility. An RN Case Manager will oversee your care, working in close collaboration with your entire hospice team which includes your Hospice MD, Social Worker, Spiritual Care Provider and Home Health Aide. If you are interested, you will also have access to a Volunteer, Bereavement Therapist and/or Creative Art Therapist.

General Inpatient Care—General Inpatient level of care is for short-term acute episodes. It is initiated when other efforts to manage symptoms are ineffective. This level of care is provided in a hospice inpatient unit or skilled nursing facility, and is for the treatment of uncontrolled symptoms and pain that cannot be managed in any other setting. You will be closely monitored by an RN Case Manager, who will work in consultation with your Hospice MD, to ensure that you continue to meet the criteria for this level of care. Once your condition is stabilized, you will be expected to return to your residence. For more information on managing uncontrolled symptoms and your options when receiving this level of care, please review Section 2 of this book.

Continuous Care (a.k.a Crisis Care)—This level of care is time-limited and offered only during a symptom crisis. Skilled nursing care is provided in your residence for at least 8 hours a day and may be provided for up to 24 hours, with the goal of treating your uncontrolled symptoms. Your RN Case Manager, with the support of your Hospice MD, will evaluate your status. Nursing support will continue until your active symptoms are managed and stabilized. As determined by the Centers for Medicare & Medicaid Services (CMS) regulation, we can only provide this level of care as an ongoing service if you are experiencing uncontrolled symptoms.

Respite Care—This short-term care is provided in a skilled nursing facility for up to five (5) days during each hospice certification period. It is recommended when your caregiver is unable to provide care for reasons of travel, illness or caregiver fatigue. Our clinicians will provide you with a list of skilled nursing facilities that we work with for this service.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

5

SECTION 1

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 1

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Your Initial Plan of Care Your initial Plan of Care was developed based on your needs and wishes, and in consultation with your Attending Physician. You can expect the following services checked below. The exact number of visits may vary depending on changes in your care needs.

Check Box

Service

Projected Frequency of Care

Hospice Medical Director Skilled Nursing Care (RN Case Manager) Social Work Spiritual Care Creative Arts Therapy Home Health Aide Volunteer Other Your Team Manager: __________________________________ Phone: ______________________ Your Hospice RN Case Manager: ________________________ Phone: ______________________ The MJHS Hospice and Palliative Care Team is here for you 24 hours a day, 7 days a week by calling: q Bronx/Manhattan: (212) 649-5555 q Brooklyn: (718) 921-7900 q Queens/Nassau: (516) 239-2400 It is very important that you call us: • Before going to the Emergency Room or hospital.

• If you are experiencing uncontrolled symptoms.

• If your condition changes and requires evaluation and treatment.

• If you or a family member is experiencing emotional distress.

•B efore any disease-related testing such as lab work, imaging, physician, or specialist consultations.

• With any changes in insurance.

• If your address changes.

6

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

What to Expect Regarding Your Care Here is the path to implementing your Plan of Care.

One: Admissions visit by an MJHS Admission Nurse within 24 hours to: • Assess pain and symptoms • Reconcile medications and order needed emergency supplies and equipment • Review and process necessary paperwork for admission into our program • Answer any questions you may have • Be sure you are comfortable Two: Call or visit by your RN Case Manager within 24–48 hours of admission to: • Discuss your proposed Plan of Care.

•O utline the members of your Interdisciplinary Care Team, how often they will visit with you, and what role they will play in providing your care.

Three: Call or visit from other care team members within five days of admission.

These team members could include a Social Worker or Spiritual Care Support.

Your team of interdisciplinary professionals will meet regularly to review and modify your Plan of Care as needed.

Your Care Team You will be cared for by an Interdisciplinary Team, highly trained medical and clinical professionals who work together with you, your family, and your physician to develop a Plan of Care that provides comprehensive and compassionate care to help you feel confident in living each day to the fullest.

Members of Your Interdisciplinary Team The Hospice Medical Director provides medical guidance for your Interdisciplinary Care Team and participates in care planning. They may make home visits as needed, and upon request can assume the role of primary care physician.

Your RN Case Manager coordinates all aspects of your care, working closely with you and all other members of your care team. They will evaluate your physical needs and work with you and your physician to implement all necessary and covered services to meet those needs.

Our RNs provide expert teaching in skilled procedures to help caregivers feel confident in their ability to care for you at home.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

7

SECTION 1

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 1

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

A Social Worker offers emotional support through counseling one-on-one or in groups.

They can also help you navigate personal, social and financial matters and is available to assist patients and families with funeral planning. We recognize that end-of-life planning is a difficult subject but find that information and expertise can help ease the stress and burden experienced by patients and their loved ones when making arrangements.

A Minister / Chaplain / Rabbi will provide emotional and spiritual support to families of all faiths through visits, prayer and counseling.

Depending on your care needs, a physical, occupational or speech therapist may provide additional specialized care for optimal function and safety.

Supportive and Special Care Programs MJHS Hospice and Palliative Care provides a wide range of additional supportive and special care programs and services designed to assist the physical, social, emotional and spiritual needs of individuals, families and caregivers.

Supportive Services Include: A Home Health Aide provides personal care such as bathing, dressing and skin care. They can also perform light housekeeping and meal preparation according to the Plan of Care developed by your hospice team. Please see page 54 for more information on how Home Health Aides can help you.

Volunteers provide support through companionship (reading, journaling, engaging in a favorite activity) and respite (staying with you while caregivers attend to personal needs). All volunteers complete a specialized training program.

Creative Arts Therapy includes music and art therapy that helps to reduce stress and anxiety, elevates mood and allows patients and families a creative outlet for expression. Our Art & SoulTM Creative Arts Therapy Program employs specially trained and licensed music and art therapists to address the unique needs of children, adolescents and adults confronting loss.

Ethics Review Committee provides extra support in understanding the different approaches to caring and how these choices fit with family values and beliefs. Working with you and your physician, we develop a Plan of Care that allows you to live each day as comfortably as possible in the company of your family and friends. Sometimes these care recommendations may cause families to have conflicting feelings based on their values and beliefs.

You have the right to take part in your care choices. To find out more about how the MJHS Ethics Review Committee might be able to help, ask your designated RN Case Manager or call (212) 649-5555 in Bronx/Manhattan, (718) 921-7900 in Brooklyn or (516) 239-2400 in Queens/Nassau.

8

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

Bereavement Support provides bereavement education and support to family members of all ages at no cost to them for thirteen months after the death of a loved one. At MJHS-HPC, death of a loved one does not end our concern for their families and those closest to them. We recognize that grief and loss can impact lives long after a loved one has died.

Special Care Programs We understand that each family has its own special needs and sensitivities, which is why we developed specialty programs that address the unique needs of each of our patients. Our deep understanding of different cultures allows us to tailor a Plan of Care for every patient and family.

Our specialty care programs include: e Honor Veterans—recognizes veteran patients who served the United States. This W program was developed jointly between Department of Veteran Affairs and the National Hospice and Palliative Care Organization with the mission of better addressing Veterans’ needs at this important time of life. The program provides compassionate listening and grateful acknowledgement of the Veterans’ mission to serve our country.

Ang Lin Asian Hospice Program—provides compassionate, multilingual and culturally sensitive end-of-life care to Asian Americans in greater New York. Our team of doctors, nurses, social workers, spiritual care support and volunteers not only speak the many languages of our patients but also understand the culture of the patients and families we serve.

Jewish Program—offers a unique way of caring for all Jewish patients by addressing individual, spiritual and religious beliefs in accordance with Jewish law (Halacha) and the patient’s family’s personal practices. Rooted in Jewish values, MJHS has at the heart of its mission a commitment to deliver culturally sensitive care to the entire Jewish community.

Some of the ways we enhance care to the Jewish community come from programs such as: • Halachic Pathway—for those who elect to participate, the Halachic Pathway is a tool that assures a patient and their family that a chosen rabbinic advisor, or Posek, will be included in the medical decision-making process.

• Holocaust Survivor Care—provides Holocaust survivors and their families with gentle, loving and peaceful care from staff who are sensitive to past experiences. We are particularly aware of and attuned to the extraordinarily unique needs of Holocaust survivors due to the emotional, social and psychological pain and discomfort they experienced during the war years. We educate and sensitize our clinicians and professional caregivers about the survivor’s past traumas, as they often resurface during the end of life.

• Center for Jewish End of Life Care—a web-based resource and knowledge center that raises awareness and educates the physical, emotional and spiritual needs of Jewish people affected by advanced and terminal illness. centerforjewishendoflifecare.org We can also assit with funeral planning and coordination with the Chevra Kadisha in order to facilitate burial within 24 hours.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

9

SECTION 1

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 2

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

MJHS Hospice, Inpatient Residence at Menorah

SECTION 2

Alternative MJHS Care Settings Although receiving care at home is an ideal choice for many patients and families, it is not the only option. MJHS is contracted to provide our specialized hospice services throughout the greater New York area in various hospice residences, inpatient units, skilled or assisted living facilities and hospitals.

Hospice Residences** In cases where home is not the optimal care location, a specialized hospice care residence may provide an alternative place to best meet all your medical needs while providing a homelike setting and a place for you and your family to spend quality time together. Some of our hospice residences have private patient suites with separate bedroom, living area, kitchenette and welcoming area with family lounge and dining room.

Inpatient Units There are some circumstances when the patient’s symptoms cannot be controlled at home and there is a need to have a specialized team provide a General Inpatient Level of Care in an inpatient unit. This setting provides the patient with 24/7 support to help ensure the peace and comfort of the patient. Inpatient units can be located within a hospital or dedicated hospice setting. Once your symptoms are stabilized you are expected to return to your residence. **Room and board is not covered under the hospice benefit. Our team can educate you on payment options.

10

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 2

Skilled or Assisted Living Facility** For our patients who are already living in a skilled or assisted living facility, our hospice team can work with the facility to coordinate the best Plan of Care. Providing hospice care at a skilled or assisted living facility does not take the place of the facility’s existing staff. We supplement the facility’s care and coordinate between doctors, nursing staff, the patient, family and others to ensure you are always comfortable and your needs are being met.

Hospital Patients who are extremely ill may receive hospice care in a hospital setting. Our hospice team will work with the hospital staff to ensure your comfort and will closely monitor you. When your condition stablizes our hospice team will work with the hospital discharge planner to create a Plan of Care in the appropriate setting.

In order to continue to receive hospice services from MJHS-HPC in any of these care settings, you must be at an MJHS-HPC contracted facility.

Managing Uncontrolled Symptoms Should you develop uncontrolled symptoms that cannot be addressed in your current residence, your hospice benefit includes the General Inpatient Level of Care provided in a contracted MJHS Hospice Inpatient Unit (IPU) or skilled nursing facility.

In order to continue receiving hospice services from MJHS-HPC, any hospitalization related to your hospice diagnosis must be provided at an MJHS-HPC contracted facility. You can decide to use services or be admitted to a hospital or facility not contracted with MJHS-HPC for symptoms related to your hospice diagnosis by revoking your hospice benefit or assuming responsibility for any fees or charges related to the service provided.

If your symptoms become unmanageable, don’t panic: STOP and call one of our 24/7 numbers: Manhattan and the Bronx: (212) 649-5555 Queens and Nassau: (516) 239-2400

Brooklyn: (718) 921-7900

A nurse or physician will immediately evaluate you and your symptoms to see if the General Inpatient Level of Care is best for you. Please speak to your RN Case Manager at the time of admission to predetermine where you would prefer to be transferred, should this level of care is needed.

For the most current list of MJHS-HPC contracted inpatient units and skilled nursing facilities ask your RN Case Manager, Social Worker or see Section 2-B Appendix.

**Room and board is not covered under the hospice benefit. Our team can educate you on payment options.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

11

SECTION 2

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Managing Comfort Levels You have the right to receive expert and effective pain management to enhance your quality of life. We’re committed to managing your comfort by helping to control or eliminate your pain. Pain can have a serious impact on your quality of life. It can affect and change your mood, cause you to lose sleep and interfere with your daily activities. It is important to keep us informed about your pain in order to assist our team in achieving the best results through prevention, anticipation and timely intervention.

• What is pain? According to the International Association for the Study of Pain, pain is defined as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage.” Pain is very subjective and it is important to recognize that no two people experience pain in the same way.

• What do I need to know about pain medications?

—You should never abruptly stop taking your pain medication.

— Pain medications can often cause constipation. An effective plan to promote bowel elimination must be started early.

— Many pain medications can cause a feeling of “dry mouth.” Placing ice chips in the mouth may help minimize this.

— At times pain medications may need to be increased to achieve the same amount of pain relief. This may occur because your body has grown tolerant to a particular medication, or it may be a sign of disease progression.

— Pain medications can sometimes cause stomach upset. Check with your doctor or hospice nurse regarding ways to decrease the upset without sacrificing pain management.

Medication Care Kits MJHS-HPC will provide prescribed medications to be kept in your home in the event of a medical crisis. The Comfort, Cardiac and Seizure Care Kits include emergency medications to make you feel comfortable when experiencing uncomfortable symptoms or pain. These kits contain medications to have on hand to help manage symptoms if it becomes necessary, and will eliminate the wait time associated with going to or calling a pharmacy for delivery. The kit you receive will depend on your condition at the time of admission.

Within a day of starting hospice care, the emergency medication kit will be delivered to your home by our pharmacy provider and should be placed in the refrigerator immediately after it arrives.

Open the kit and use the medications only under the direction of the RN Case Manager or prescriber. These medications are for the patient only.

12

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 2

Emergency Medication Kits Medications that can provide comfort are sent to your home in anticipation of your needs.

As part of your Plan of Care you may receive one or more of the following care kits: • Comfort Care Kit • Cardiac Care Kit • Seizure Care Kit The MJHS Hospice and Palliative Care Emergency Medication Kit contains medications to make you feel comfortable when experiencing uncomfortable symptoms or pain. Having a care kit on hand eliminates the wait time associated with going to or calling a pharmacy for delivery.

Adult Comfort Care Kit

Adult Cardiac Care/Seizure Kits

SYMPTOMS

MEDICATION

MEDICATION

Nausea, Vomiting

ABHR Lorazepam (Ativan ) suppository Diphenhydramine (Benadryl®) Haloperidol (Haldol®) Metoclopramide (Reglan®) Prochlorperazine suppository

ABHR Lorazepam (Ativan®) suppository

Pain, Fever

Acetaminophen suppository

Acetaminophen suppository

Agitation

Haloperidol

Haloperidol

Secretions

Atropine

Atropine

Anxiety, Agitation

Lorazepam

Lorazepam

Pain, Shortness of Breath

Morphine sulfate

Morphine sulfate

Constipation

Senokot-S Bisacodyl suppository

Senokot-S® Bisacodyl suppository

Acute Seizure Activity

N/A

Diazepam

Edema

N/A

Furosemide

Angina

N/A

Nitroglycerine

®

®

Diphenhydramine (Benadryl®) Haloperidol (Haldol®) Metoclopramide (Reglan®) Prochlorperazine suppository

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

13

SECTION 2

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Describing Your Pain Members of your care team will use two different scales to better understand how you are feeling. This will allow them to be consistent in helping you feel better.

1. On a scale of 0 to 10, how do you feel? (with 0 being no pain and 10 being unbearable pain) 2. Which face best describes what you are feeling?

RATING YOUR PAIN 0 1 2 3 4 5 6 7 8 9 10

no pain

distressing pain

unbearable pain

CHOOSE THE FACE THAT BEST DESCRIBES HOW YOU FEEL

0 no hurt

2 hurts a little bit

4 hurts a little more

6 hurts even more

8 hurts a whole lot

10 hurts worst

Describing the Pain So We Can Help You • Where in the body is the pain located?

• When did the pain begin?

• What does the pain feel like?

• Is the pain continuous or does it occur on and off?

• Does the pain stay in one area or move around?

• Is the pain mild or severe?

•W hich word(s) best describe(s) the pain? (e.g., shooting, burning, stabbing, aching, etc.) ________________________________________________________________________________

On the following pages you will find a pain chart to help you track how you feel.

14

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 2

Keeping Track of How You Feel Current Pain Medications: _ ________________________________________________________ _________________________________________________________ Pain Rating (0-10)

Describe the pain What did you do to (location, type, what were relieve the pain? you doing?) (medication, how much? Other?)

After 2 hours Pain Rating (0 – 10)

Comments

TEAR OFF

Day/Time

Key: 0 = No pain, no hurt 1–2 = Mild pain, hurts a little bit 3–4 = Moderate pain, hurts a little more

5–6 = Distressing pain, hurts even more 7–8 = Horrible pain, hurts a whole lot more 9–10 = Unbearable pain, hurts worst

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

15

SECTION 2

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Keeping Track of How You Feel Current Pain Medications: _ ________________________________________________________ _________________________________________________________ Day/Time

Pain Rating (0-10)

Describe the pain What did you do to (location, type, what were relieve the pain? you doing?) (medication, how much? Other?)

After 2 hours Pain Rating (0 – 10)

Comments

TEAR OFF

Key: 0 = No pain, no hurt 1–2 = Mild pain, hurts a little bit 3–4 = Moderate pain, hurts a little more

16

5–6 = Distressing pain, hurts even more 7–8 = Horrible pain, hurts a whole lot more 9–10 = Unbearable pain, hurts worst

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 2

Keeping Track of How You Feel Current Pain Medications: _ ________________________________________________________ _________________________________________________________ Pain Rating (0-10)

Describe the pain What did you do to (location, type, what were relieve the pain? you doing?) (medication, how much? Other?)

After 2 hours Pain Rating (0 – 10)

Comments

TEAR OFF

Day/Time

Key: 0 = No pain, no hurt 1–2 = Mild pain, hurts a little bit 3–4 = Moderate pain, hurts a little more

5–6 = Distressing pain, hurts even more 7–8 = Horrible pain, hurts a whole lot more 9–10 = Unbearable pain, hurts worst

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

17

SECTION 2

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Keeping Track of How You Feel Current Pain Medications: _ ________________________________________________________ _________________________________________________________ Day/Time

Pain Rating (0-10)

Describe the pain What did you do to (location, type, what were relieve the pain? you doing?) (medication, how much? Other?)

After 2 hours Pain Rating (0 – 10)

Comments

TEAR OFF

Key: 0 = No pain, no hurt 1–2 = Mild pain, hurts a little bit 3–4 = Moderate pain, hurts a little more

18

5–6 = Distressing pain, hurts even more 7–8 = Horrible pain, hurts a whole lot more 9–10 = Unbearable pain, hurts worst

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 3 SECTION 3

Planning in Advance for Your Medical Treatment In accordance with the federal Patient Self-Determination Act (PSDA) of 1990 and New York State laws, MJHS-HPC is providing you written information about your rights when it comes to making health care decisions and executing advance directives.

As a patient you have the right to: Plan in Advance Sometimes because of illness or injury people are unable to talk to a doctor and decide about treatment for themselves. You may wish to plan in advance and fill out Advance Directives to ensure that your wishes about treatment will be followed if you become unable to decide for yourself. In New York State, appointing someone you can trust to decide about treatment if you become unable to decide for yourself is the best way to protect your treatment wishes and concerns.

Make Decisions about Treatment Adults in New York State have the right to accept or refuse medical treatment, including lifesustaining treatment. Our constitution and state laws protect this right. This means that you have the right to request or consent to treatment, to refuse treatment before it has started and to have treatment stopped once it has begun.

Decide about Cardiopulmonary Resuscitation and Do-Not-Resuscitate (DNR) Your right to decide about treatment includes the right to decide about cardiopulmonary resuscitation (CPR). CPR is emergency treatment to restart the heart and lungs when your breathing or circulation stop. Sometimes doctors and patients decide in advance that CPR should not be provided, and the doctor gives the medical staff an order not to resuscitate (DNR order). If your physical or mental condition prevents you from deciding about CPR, someone you appoint, your family members or others close to you can decide.

Decide About Do Not Intubate (DNI) Do not Intubate (DNI) means that no breathing tube will be placed in the throat in the event of breathing difficulties or respiratory arrest. If you stop breathing, you will not be placed on an artificial breathing machine, and the insertion of a tube or mechanical ventilation will not be initiated. The DNI order can be a separate Advance Directive from the DNR order, but in most cases they are ordered together.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

19

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 3

Self-Determination Is the Right to Participate in Your Health Care Decision Making Advance Directives are written documents that assist you in communicating your wishes regarding your medical care if you become physically or mentally unable to communicate due to an accident or illness. Many types of Advance Directive documents exist. Below are examples of four Advance Directive documents: 1. A Health Care Proxy is a written document that allows you to choose a designated person to make medical decisions on your behalf when your doctor determines you are unable to do so for yourself.

2. A Living Will is a document that contains your health care wishes and is addressed to unnamed family, friends, hospitals and other health care facilities. It allows you to express your health care wishes in the event your doctor determines you are no longer able to make medical decisions for yourself.

3. A Do-Not-Resuscitate (DNR) order is a written document that tells medical professionals to not perform CPR if your breathing or heartbeat stops. Doctors issue DNR orders.

4. Halachic Pathway assures that a patient’s family and chosen rabbinic advisor, or Posek, can be included in the medical decision-making process.

If you haven’t filled out any of these forms and would like to, ask your RN Case Manager.

They will be able to provide you with the forms and will also be able to assist you in filling them out.

The Family Health Care Decisions Act The Family Health Care Decisions Act was adopted in New York State in 2010 to provide for the appointment of a “surrogate” or decision maker in the case where a patient lacks the capacity to make his or her own decisions and does not have a health care proxy. The surrogates are listed here in priority order: 1. Court-appointed guardian 2. Spouse or domestic partner 3. Child over 18 years old 4. Parent 5. Sibling over 18 years old 6. Close friend or relative (not listed above) who has maintained regular contact with the patient as to be familiar with the patient’s activities, health and religious or moral beliefs, and who presents a signed statement to the attending physician attesting to that.

20

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Surrogate’s Authority •A surrogate has the authority to make any and all health care decisions on an adult patient’s behalf that the patient could make for him or herself.

SECTION 3

•H owever, a healthcare provider is not obligated to seek the consent of a surrogate if the patient has already made a decision about a proposed health care treatment and expressed that decision orally or in writing. With respect to a decision to withdraw or withhold life-sustaining treatment made by a patient prior to the appointment of a surrogate, the patient must have expressed the decision either: —In writing; or — Orally, during a hospitalization, in the presence of two witnesses, both of whom are 18 years of age or older, and at least one of whom is a health or social services practitioner affiliated with the hospital.

•A surrogate’s authority commences upon a determination by the patient’s attending physician (in addition to any other healthcare practitioners as required by New York State law) that the patient lacks decision-making capacity.

• I f the patient’s attending physician determines that the patient has regained decisionmaking capacity, the surrogate’s authority shall cease.

The surrogate’s authority does not apply if the surrogate has no financial responsibility for the medical care they determine is in the best interests of the incapacitated patient unless they have an independent obligation under law, such as a spouse. A surrogate, health care provider or ethics committee members will not be subject to criminal or civil liability for action taken in good faith under the Family Health Care Decisions Act. Once the surrogate’s authority is triggered, the surrogate must make health care decisions: • In accordance with the patient’s wishes, including the patient’s religious and moral beliefs; or • I f the patient’s wishes are not reasonably known and cannot with reasonable diligence be ascertained, in accordance with the patient’s best interests. An assessment of the patient’s best interests shall include: —Consideration of the dignity and uniqueness of every person; —The possibility and extent of preserving the patient’s life; —The preservation, improvement or restoration of the patient’s health or functioning; — The relief of the patient’s suffering and any medical condition and such other concerns; and —Values as a reasonable person in the patient’s circumstances would wish to consider.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

21

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

If the treatment decision involves the withdrawal or withholding of life-sustaining treatment, the law imposes additional conditions on the surrogate’s authority to withdraw or withhold life-sustaining treatment. In order to withdraw or withhold life-sustaining treatment, a surrogate must show that: SECTION 3

•T he treatment would be an extraordinary burden to the patient, and an attending physician determines, with the independent concurrence of another physician, that, to a reasonable degree of medical certainty and in accord with accepted medical standards: — The patient has an illness or injury which can be expected to cause death within six months, whether or not treatment is provided; or the patient is permanently unconscious; or — The provision of treatment would involve such pain, suffering or other burden that it would reasonably be deemed inhumane or extraordinarily burdensome under the circumstances, and the patient has an irreversible or incurable condition, as determined by an attending physician with the independent concurrence of another physician to a reasonable degree of medical certainty and in accord with accepted medical standards.

For decisions to withdraw or withhold life-sustaining treatment, the law further requires a referral to the facility’s ethics review committee in these situations: • If the surrogate wants to refuse life-sustaining treatment in a nursing home (not including CPR) • If the attending physician at a hospital objects to a surrogate’s decision to withdraw or withhold nutrition and hydration provided by means of medical treatment. In order to make these decisions, hospitals must give surrogates access to the patient’s medical information, medical records, diagnosis, prognosis, the nature and consequences of the health care and the benefits and risks of treatment.

• The patient has already made a decision about the proposed health care, expressed orally or in writing; or • The patient has made a decision to withdraw or withhold life-sustaining treatment; or • The patient has expressed orally during hospitalization in the presence of two witnesses eighteen years of age or older, at least one of whom is a health or social services practitioner affiliated with the hospital, or expressed in writing.

Frequently Asked Questions About Health Care Proxy Q. Why should I choose a health care agent?

A. If you become unable, even temporarily, to make health care decisions, someone else must decide for you. Health care providers often look to family members for guidance. Family members may express what they think your wishes are related to a particular treatment.

However, in New York State, only a health care agent you appoint has the legal authority to make treatment decisions if you are unable to decide for yourself. Appointing an agent lets you control your medical treatment by: • Allowing your agent to make health care decisions on your behalf as you would want them decided;

22

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

•C hoosing one person to make health care decisions because you think that person would make the best decisions; •C hoosing one person to avoid conflict or confusion among family members and/or significant others.

Q. Who can be a health care agent?

A. Anyone 18 years of age or older can be a health care agent. The person you are appointing as your agent or your alternate agent cannot sign as a witness on your Health Care Proxy form.

Q. How do I appoint a health care agent?

A. All competent adults, 18 years of age or older, can appoint a health care agent by signing a form called a Health Care Proxy. You don’t need a lawyer or a notary, just two adult witness. Your agent cannot sign as a witness. You can use the form printed, but you don’t have to use this form.

Q. When would my health care agent begin to make health care decisions for me?

A. Your health care agent would begin to make health care decisions after your doctor decides that you are not able to make your own health care decisions. As long as you are able to make health care decisions for yourself, you will have the right to do so.

Q. What decisions can my health care agent make?

A. Unless you limit your health care agent’s authority, your agent will be able to make any health care decision that you could have made if you were able to decide for yourself. Your agent can agree that you should receive treatment, choose among different treatments and decide that treatments should not be provided, in accordance with your wishes and interests. However, your agent can only make decisions about artificial nutrition and hydration (nourishment and water provided by feeding tube or intravenous line) if he or she knows your wishes from what you have said or what you have written. The Health Care Proxy form does not give your agent the power to make non-health care decisions for you, such as financial decisions.

Q. Why do I need to appoint a health care agent if I’m young and healthy?

A. Appointing a health care agent is a good idea even though you are not elderly or terminally ill.

A health care agent can act on your behalf if you become even temporarily unable to make your own health care decisions (such as might occur if you are under general anesthesia or have become comatose because of an accident). When you again become able to make your own health care decisions, your health care agent will no longer be authorized to act.

Q. How will my health care agent make decisions?

A. Your agent must follow your wishes, as well as your moral and religious beliefs. You may write instructions on your Health Care Proxy form or simply discuss them with your agent.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

23

SECTION 3

You may also appoint an alternate agent to take over if your first choice cannot make decisions for you.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 3

Frequently Asked Questions About Health Care Proxy continued Q. How will my health care agent know my wishes?

A. Having an open and frank discussion about your wishes with your health care agent will put him or her in a better position to serve your interests. If your agent does not know your wishes or beliefs, your agent is legally required to act in your best interest. Because this a major responsibility for the person you appoint as your health care agent, you should have a discussion with the person about what types of treatments you would or would not want under different types of circumstances, such as: • Whether you would want life support initiated/continued/removed if you are in a permanent coma; • Whether you would want treatments initiated/continued/removed if you have a terminal illness; •W hether you would want artificial nutrition and hydration initiated/withheld or continued or withdrawn and under what types of circumstances.

Q. Can my health care agent overrule my wishes or prior treatment instructions?

A. No. Your agent is obligated to make decisions based on your wishes. If you clearly expressed particular wishes, or gave particular treatment instructions, your agent has a duty to follow those wishes or instructions unless he or she has a good faith basis for believing that your wishes changed or do not apply to the circumstances.

Q. Who will pay attention to my agent?

A. All hospitals, nursing homes, doctors and other health care providers are legally required to provide your health care agent with the same information that would be provided to you and to honor the decisions made by your agent as if they were made by you. If a hospital or nursing home objects to some treatment options (such as removing certain treatment) they must tell you or your agent BEFORE or upon admission, if reasonably possible.

Q. What if my health care agent is not available when decisions must be made?

A. You may appoint an alternate agent to decide for you if your health care agent is unavailable, unable or unwilling to act when decisions must be made. Otherwise, health care providers will make health care decisions for you that follow instructions you gave while you were still able to do so. Any instructions that you write on your Health Care Proxy form will guide health care providers under these circumstances.

Q. What if I change my mind?

A. It is easy to cancel your Health Care Proxy, to change the person you have chosen as your health care agent or to change any instructions or limitations you have included on the form. Simply fill out a new form. In addition, you may indicate that your Health Care Proxy expires on a specified date or if certain events occur. Otherwise, the Health Care Proxy will be valid indefinitely. If you choose your spouse as your health care agent or as your alternate, and you get divorced or legally separated, the appointment is automatically cancelled. However, if you would like your former spouse to remain your agent, you may note this on your current form and date it or complete a new form naming your former spouse.

24

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Q. Can my health care agent be legally liable for decisions made on my health?

A. No. Your health care agent will not be liable for health care decisions made in good faith on your behalf. Also, he or she cannot be held liable for costs of your care just because he or she is your agent.

Q. Where should I keep my Health Care Proxy form after it is signed?

A. Give a copy to your agent, your doctor, your attorney and any other family members or close friends you want. Keep a copy in your wallet or purse or with other important papers, but not in a location where no one can access it, like a safe deposit box. Bring a copy if you are admitted to the hospital, even for minor surgery, or if you undergo outpatient surgery.

Q. May I use the Health Care Proxy form to express my wishes about organ and/or tissue donation?

A. Yes. Use the optional organ and tissue donation section on the Health Care Proxy form and be sure to have the section witnessed by two people. You may specify that your organs and/ or tissues be used for transplantation, research or educational purposes. Any limitation(s) associated with your wishes should be noted in this section of the proxy.

Failure to include your wishes and instructions on your Health Care Proxy form will not be taken to mean that you do not want to be an organ and/or tissue donor.

Q. Can my health care agent make decisions for me about organ and/or tissue donation?

A. No. The power of a health care agent to make health care decisions on your behalf ends upon your death. Noting your wishes on your Health Care Proxy form allows you to clearly state your wishes about organ and tissue donation.

Q. Who can consent to a donation if I choose not to state my wishes at this time?

A. It is important to note your wishes about organ and/or tissue donation so that family members who will be approached about donation are aware of your wishes. However, New York law provides a list of individuals who are authorized to consent to organ and/or tissue donation on your behalf. In priority they are: your spouse, a son or daughter 18 years of age or older, either of your parents, a brother or sister 18 years of age or older, a guardian appointed by a court prior to the donor’s death or any other legally authorized person.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

25

SECTION 3

Q. Is a Health Care Proxy the same as a living will?

A. No. A living will is a document that provides specific instructions about health care decisions.

You may put such instructions on your Health Care Proxy form. The Health Care Proxy allows you to choose someone you trust to make health care decisions on your behalf. Unlike a living will, a Health Care Proxy does not require that you know in advance all the decisions that may arise. Instead, your health care agent can interpret your wishes as medical circumstances change and can make decisions you could not have known would have to be made.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 3

Health Care Proxy — Appointing Your Health Care Agent in New York State The New York Health Care Proxy Law allows you to appoint someone you trust—for example, a family member or close friend—to make health care decisions for you if you lose the ability to make decisions yourself. By appointing a health care agent, you can make sure that health care providers follow your wishes. Your agent can also decide how your wishes apply as your medical condition changes. Hospitals, doctors and other health care providers must follow your agent’s decisions as if they were your own. You may give the person you select as your health care agent as little or as much authority as you want. You may allow your agent to make all health care decisions or only certain ones. You may also give your agent instructions that he or she has to follow. The Health Care Proxy Form can also be used to document your wishes or instructions with regard to organ and/or tissue donation.

About the Health Care Proxy Form It is an important legal document. Before signing, you should understand the following facts: 1. The form gives the person you choose as your agent the authority to make all health care decisions for you, including the decision to remove or provide life-sustaining treatment, unless you say otherwise in the form. “Health care” means any treatment, service or procedure to diagnose or treat your physical or mental condition.

2. Unless your agent reasonably knows your wishes about artificial nutrition and hydration (nourishment and water provided by a feeding tube or intravenous line), he or she will not be allowed to refuse or consent to those measures for you.

3. Your agent will start making decisions for you when your doctor determines that you are not able to make health care decisions for yourself.

4. You may write on the form examples of the types of treatments that you would not desire and/or those treatments that you want to make sure you receive. The instructions may be used to limit the decision-making power of the agent. Your agent must follow your instructions when making decisions for you.

5. You do not need a lawyer to fill out the form.

6. You may choose any adult (18 years of age or older), including a family member or close friend, to be your agent. If you select a doctor as your agent, he or she will have to choose between acting as your agent or as your attending doctor because a doctor cannot do both at the same time. Also, if you are a patient or resident of a hospital, nursing home or mental hygiene facility, there are special restrictions about naming someone who works for that facility as your agent. Ask staff at the facility to explain those restrictions.

26

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 3

7. Before appointing someone as your health care agent, discuss it with him or her to make sure that he or she is willing to act as your agent. Tell the person you choose that he or she will be your health care agent. Discuss your health care wishes and the form with your agent. Be sure to give him or her a signed copy. Your agent cannot be sued for health care decisions made in good faith.

8. If you have named your spouse as your health care agent and you later become divorced or legally separated, your former spouse can no longer be your agent by law, unless you state otherwise. If you would like your former spouse to remain your agent, you may note this on your current form and date it, or complete a new form naming your former spouse.

9. Even though you have signed the form, you have the right to make health care decisions for yourself as long as you are able to do so, and treatment cannot be given to you or stopped if you object, nor will your agent have any power to object.

10. You may cancel the authority given to your agent by telling him or her or your health care provider orally or in writing.

11. Appointing a health care agent is voluntary. No one can require you to appoint one.

12. You may express your wishes or instructions regarding organ and/or tissue donation on the form.

Having a signed health care proxy form is the best way to ensure that health care is provided according to the patient’s wishes.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

27

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Frequently Asked Questions about Advance Directives

SECTION 3

You may have questions about what Advance Directives mean. Here are some frequently asked questions.

Q: What are Advance Directives?

A: Advance Directives are instructions you give for future medical care should you become unable to communicate. There are two common forms—a Health Care Proxy and a Living Will.

Q: What is a Health Care Proxy?

A: A Health Care Proxy allows you to choose a designated individual and an alternate individual to make any medical care decisions on your behalf, including decisions regarding the use of lifesustaining treatment.

Q: When does a Health Care Proxy become effective?

A: The Health Care Proxy goes into effect as soon as you sign it. Your health care agent cannot act for you until your physician has certified that you are “unable to make or communicate your own health care decisions.” If your doctor determines that you have regained that capacity, the authority of the agent will cease.

Q: What is a Living Will?

A: A Living Will is a document that states your healthcare wishes, such as whether you want heroic measures used to keep you alive if you become terminally ill. It provides guidelines to your doctor and health care agent.

Q: What decisions should I consider?

A: You should consider four main issues: 1. Whether to have artificial nutrition/hydration.

2. Whether to be hospitalized from home/nursing home.

3. Whether to change treatment goal from curative to comfort.

4. Whether to have Cardiopulmonary Resuscitation (CPR) versus a Do-Not-Resuscitate (DNR) order.

Q: What is a Do-Not-Resuscitate (DNR) order?

A: A DNR contains written instructions from a physician telling health care providers not to perform CPR or related procedures on a patient. These instructions are usually issued for people who are terminally ill, who are frail or elderly, or who have a serious or disabling condition.

Q: What happens when Cardiopulmonary Resuscitation (CPR) is given?

A: When successful, CPR restores breathing and/or restarts a stopped heart. Basic CPR consists of chest compressions and artificial respirations. Related procedures may include intubations, IV drugs, electrical shock and/or mechanical ventilation.

Q: Why would someone not want CPR? A: A person may refuse CPR when there is no expected medical benefit. CPR is not meant for people who are frail. Quality of life would suffer as a result. CPR may only be partly successful.

The person may survive, but with serious damage to the brain, or be dependent on machines. CPR could interfere with the person’s wish for a natural, peaceful death.

28

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 3

Be sure to give copies of both the Health Care Proxy and the Living Will to your doctor, your health care agent and all health care providers you are working with at MJHS-HPC. Keep the originals in a safe yet reachable place.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

29

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 3

Frequently Asked Questions for Our Jewish Patients and Their Families Q: Is Judaism and Halacha (Jewish law) compatible with hospice?

A: Yes. Hospice provides comfort care with emphasis on quality of life. In Jewish hospice, we concern ourselves with sanctity of life. We recognize that many patients look to Halacha and tradition for guidance and answers. MJHS-HPC prides itself on being committed to helping families address all their religious and spiritual concerns.

Q: What is uniquely Jewish about MJHS Hospice and Palliative Care?

A: Our clergy team includes Rabbis who specialize in the field of pastoral care. Our entire staff is trained to be sensitive to the cultural needs of Jewish patients and families. They are also taught how to respect and support the observance of Kashrut, Shabbat and Jewish holidays in the Jewish home.

Q: Am I obligated to sign a DNR order to receive hospice services?

A: No. MJHS-HPC does not require a Do-Not-Resuscitate (DNR) order to qualify for admission.

The hospice Rabbi and/or registered nurse will speak with you and your family about advance directives such as DNR, the Halachic medical directive and other special wishes related to your care and treatment. As the medical condition changes these discussions will continue, and will include your Halachic advisor.

Q: How can I ensure that my hospice care will conform to Jewish tradition and Halacha if I so desire?

A: At MJHS-HPC we offer the “Halachic Pathway” upon admission to all Jewish patients. The pathway is a simple document that identifies a specific Rabbi designated by the family to guide them in medical decisions in consultation with the physician throughout the patient’s course of treatment, should they desire. It serves as an official Health Care Proxy and is recognized legally by New York State.

Q: How can my Rabbi of choice be part of the medical team and how do I know that medical decisions will be compatible with my Rabbi of choice and/or Halacha (Jewish law)?

A: At MJHS-HPC we are dedicated to the goal of collaboration between the medical team and doctors, Rabbis and families to discuss important choices of care as relevant to the patient.

Our team works together with the pastoral staff and/or Halachic advisor to help families make appropriate medical decisions. Our team addresses advance directives, administration of artificial nutrition and hydration and other aspects of supportive care. Each patient’s religious concerns are honored throughout the course of illness, so that decisions are made specific to the patient’s medical condition.

Q: What if my family Rabbi does not want to be the Halachic advisor?

A: Not all Rabbis feel qualified as experts in medical areas. Generally, they will seek guidance from an appropriate Rabbinic expert. If the patient prefers, MJHS-HPC will seek guidance from Halachic advisors who are noted Poskim (Rabbinic experts) in Halachic medical decision making.

30

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 3

Q: Will MJHS-HPC provide supportive care services such as artificial nutrition and hydration, antibiotics and other medications, blood transfusions and other diagnostic tests and treatments?

A: Y es, supportive care will be provided if deemed necessary in consultation with the hospice doctor, pastoral counselor and rabbinic advisor. Medical treatments aimed at the relief of symptoms and improving quality of life are provided.

Q: What if a patient passes away on Shabbat or Jewish holidays while in the hospice inpatient unit?

A: If requested by the family, MJHS-HPC works closely with the local Chevra Kadisha (burial societies) for postmortem care.

Q: Can my family or friends stay with me while I am in the inpatient unit?

A: Family members and/or friends may stay with the patient 24/7. For Shabbat and holiday stays, hospitality can be provided upon request to pastoral staff.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

31

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Example of a Do-Not-Resuscitate (DNR) Order

SECTION 3

State of New York Department of Health Nonhospital Order Not to Resuscitate (DNR Order)

Y L N

O E

Person’s Name___________________________________________________________________

L P

Date of Birth ____ / ____ / ____ Do not resuscitate the person named above.

M A X

Physician Signature_______________________________________________________________ Print Name:_____________________________________________________________________ License #:______________________________________________________________________ Date: ____ / ____ / ____

E

It is the responsibility of the physician to determine, at least every 90 days, whether this order continues to be appropriate, and to indicate this by a note in the person’s medical chart. The issuance of a new form is NOT required, and under the law this order should be considered valid unless it is known that it has been revoked. This order remains valid and must be followed, even if it has not been reviewed within the 90-day period.

32

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 4

Notice of Privacy Practices This notice describes how medical information about you may be used and disclosed and how you can get access to this information. Please review it carefully.

MJHS Hospice and Palliative Care (MJHS-HPC) is required by federal and state law to protect the privacy of your protected health information (PHI), which is maintained in your medical health record and may reveal your identity. We provide you with a copy of this notice, which describes the health information privacy practices of MJHS-HPC staff and affiliated health care providers that jointly provide health care services to you. You or a personal representative may also obtain a copy of this notice from MJHS-HPC staff.

You may request copies of separate notices explaining special privacy protections that apply to HIV-related information, alcohol and substance abuse treatment information, mental health information and genetic information.

After you have read this document, please contact the Privacy Officer at (212) 649-5590 if you have any questions about this notice or would like further information.

Who will follow this notice?

MJHS-HPC provides health care to patients jointly with other health care providers and organizations. The privacy practices described in this notice will be followed by: • Any health care provider who renders service to you; • All employees, health care providers, trainees students or volunteers; and • Any person or entity with which we do business (our Business Associates).

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

33

SECTION 4

General Privacy Information

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

What information is protected?

We are committed to protecting the privacy of information we gather about you while providing health-related services, whether it be in a paper or electronic record form. Health information that identifies you is protected. For instance, health information that contains your demographic information (such as your name or address), unique identifying numbers (such as social security, telephone or driver’s license numbers) or other types of identifying information is protected. Some examples of protected health information are:

SECTION 4

• I nformation indicating that you are a patient of MJHS Hospice and Palliative Care receiving treatment or other health-related services; • Information about your health condition (such as a disease you may have); • I nformation about health care products or services you have received or may receive in the future (such as an operation); or • I nformation about your health care benefits under an insurance plan (such as whether a prescription is covered).

General Consent We will only obtain your general written consent one time to use and disclose your health information to treat or care for you, collect payment for that treatment or care or conduct our business operations. In some cases, we also may disclose your health information with another health care provider or payer for payment activities and certain business operations.

How MJHS Hospice and Palliative Care May Use And Disclose Your Protected Health Information: MJHS Hospice and Palliative Care may use and disclose your protected health information in the following instances: •T o you or someone who has the legal right to act for you (your personal representative) if requested; • To the Secretary of the Department of Health and Human Services, if requested; and • Where required by law.

MJHS Hospice and Palliative Care has the right to use and disclose your protected health information to obtain payment for the services provided to you and to operate in the following instances: • To submit claims and get paid for services we provide to you; and • To make sure you receive quality health care or to resolve any complaints you might have.

34

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

MJHS Hospice and Palliative Care may use and disclose your protected health information for the following purposes under limited circumstances: •T o federal, state and other agencies that have the legal right to receive the information (such as to make sure MJHS Hospice and Palliative Care is providing quality care and to assist federal and state programs, such as Medicaid and Medicare); • For public health activities (such as reporting disease outbreaks); • For government health care oversight activities (such as fraud and abuse investigations); • For judicial and administrative proceedings (such as in response to a court order);

•F or research studies that meet all privacy law requirements (such as research related to the prevention of disease or disability); • To avoid a serious and imminent threat to health or safety; •T o contact you in order to recommend possible treatment alternatives or health-related benefits and services that may be of interest to you; •T o create a collection of information that has been identified and can no longer be traced back to you; • I f you do not object, we may share your health information with a family member, relative or close personal friend who is involved in your care or involved in payment for that care; • I f you provide authorization, we may use or share demographic information about you (or share it with MJHS Foundation, a charitable foundation acting on our behalf), including information about your age, gender, health insurance status and dates of service when care was rendered, when deciding whether to contact you, your personal representative or family members in fundraising activities to help in our business operations. You will be provided with information on how not to receive further fundraising communications.

By law, MJHS Hospice and Palliative Care must have your written permission (an “Authorization”) to use or give out your personal medical information for any purpose that is not set out in this notice. Examples of uses and sharing of health information where a written authorization would be needed are when psychotherapy notes are involved and for marketing purposes or the sale of health information as defined by federal law. You may withdraw (“Revoke”) your written permission at any time, except if MJHS Hospice and Palliative Care has already acted based on your permission.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

35

SECTION 4

•F or law enforcement purposes (such as providing limited information to locate a missing person);

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Your Rights By law, you have the right to: •S ee and get a copy (paper or electronic) of your personal medical record held by MJHS Hospice and Palliative Care;

SECTION 4

•H ave your personal medical record information amended if you believe that it is wrong or if information is missing, and MJHS Hospice and Palliative Care agrees to your request. If MJHS Hospice and Palliative Care disagrees with your request for amendment, you may have a statement of your disagreement added to your personal medical record information; •O btain a list of people, companies and others to whom we have disclosed your personal health information from MJHS Hospice and Palliative Care (an “Accounting”). The Accounting will not include disclosures made to you or your personal representative or someone you designate to receive your personal health information; or to obtain payment for the services MJHS Hospice and Palliative Care provides to you; or for law enforcement purposes; • Ask MJHS Hospice and Palliative Care to communicate with you in a different manner or at a different place (for example, by sending materials to a PO Box instead of your home address); •A sk MJHS Hospice and Palliative Care to limit how your protected health information is used and given out to obtain payment or operate our business. Please note that we may not be able to agree to your request; •A sk MJHS Hospice and Palliative Care to restrict disclosing protected health information to your health plan if it pertains to a health care item or service which has been paid in full other than by the health plan; •R eceive notification by MJHS Hospice and Palliative Care of a breach of your unsecured protected health information; and • Get a separate paper copy of this notice.

• To request: —Access to your Protected Health Information; or —A copy of your Protected Health Information/medical record; or —An accounting of disclosures of your Protected Health Information; or —An amendment to your personal medical information; or — A restriction on the disclosures of your Protected Health Information to your health plan if pertaining to health care items or services paid in full other than by the health plan.

36

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

How to Make a Request: Contact the Privacy Officer at: MJHS Hospice and Palliative Care 39 Broadway, Suite 200 New York, NY 10006 (212) 649-5590

Privacy Complaints

The Secretary of Health and Human Services Region II – New York (New Jersey, New York, Puerto Rico, Virgin Islands)

April Smith-Hirak Regional Health Administrator U.S. Department of Health and Human Services Jacob Javits Federal Building 26 Federal Plaza – Suite 3835 New York, NY 10278 Voice Phone (212) 264-2560 FAX (212) 264-1324 TDD (800) 537-7697

IMPORTANT NOTICE: Special privacy protections apply to HIV-related information, alcohol and substance abuse treatment information, mental health information and genetic information.

Some parts of this Notice of Privacy Practices may not apply to these types of information. If your treatment involves this information, you will be provided with separate notices explaining how the information will be protected.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

37

SECTION 4

If you believe MJHS Hospice and Palliative Care has violated your privacy rights as described in this notice, you may file a complaint with us or:

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 5

Patient and Family Bill of Rights and Responsibilities At MJHS-HPC, we believe that you are in control of your health and the decisions about your health. We are committed to supporting your decisions. That is why we have established a Patient and Family Bill of Rights and Responsibilities. Knowing your rights and understanding your responsibilities as a patient will help you make better decisions about your health care.

This Bill of Rights and Responsibilities also describes your responsibilities as a patient and/or caregiver.

SECTION 5

•Y ou have the right to be listened to and treated with dignity, consideration, respect and with full recognition of individuality. This includes respect for your privacy, property, security and your safety.

•Y ou have the right to be fully informed of your rights, and, to the extent desired, of your medical condition/diagnosis, prognosis, treatment choices—including alternatives to care and risks involved—and to have your questions answered honestly.

•Y ou have the right to a quality of life, as free from pain, including appropriate assessment and management of pain, as possible, and to have your own lifestyle, preferences and values respected, including the sanctity of your body after death.

•Y ou have the right to free language assistance and to be given information in a language or form you can reasonably understand, including communication devices or techniques that enhance your ability to make decisions.

• You have the right to be informed on admission of advance directives and receive the MJHS-HPC Advance Directives Packet, which includes: the NY State Department of Health documents, “Planning in Advance for Your Medical Treatment” and “Appointing your Health Care Agent—New York State Proxy Law,” which include information about planning in advance for medical treatments, appointing a Health Care Agent and The MJHS-HPC policy regarding implementation of these rights.

•Y ou have the right to choose or designate your choice of Attending Physician, which can include appointing the Hospice MD as your Attending Physician.

•Y ou have the right to self-determination information and you have the right not to be discriminated against in the provision of care or otherwise based upon whether or not you have executed an advance directive. Existence or lack of advance directives does not hamper your access to care or services.

38

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Patient and Family Bill of Rights and Responsibilities continued •Y ou have the right to refuse medication and/or treatments, including experimental treatment or participation in research (unless you have given documented voluntary informed consent), and the right to be informed of the possible medical consequences of such refusal or participation.

•Y ou have the right to expect MJHS-HPC to maintain a written Plan of Care and be advised of changes in your Plan of Care before they occur, and to participate to the extent desired in decision making, planning, and carrying out care and treatments and to be involved in resolving conflicts about your care or service decisions and the right to participate in ethical issues arising in your care.

•Y ou have the right to competent, sensitive, concerned, individualized, appropriate, and timely care where and when needed for the illness which qualifies you for hospice services, and to receive comfort when cure is no longer feasible.

•Y ou have the right to privacy concerning matters which have no bearing on your illness or care.

•Y ou have the right to strict confidentiality of your records and all information regarding your care and services, and the right to approve and/or refuse their release to anyone outside MJHS-HPC (except in the case of your transfer to a health facility or as required by law or third-party payer), and to review your clinical record in the agency office or receive a copy of it.

•Y ou have the right to revoke the services or treatment being offered/provided from the Hospice program at any time, and to be informed of continuing health care needs following discharge or transfer and to be involved in the plan for the provision of such care.

•Y ou have the right to be informed of MJHS-HPC’s ownership status and its affiliation with any entities to which you are referred.

•Y ou have the right to receive on admission a statement of services available from MJHS-HPC and be advised prior to initiation of care of the extent to which payment for agency services may be expected from any third-party payer and the extent from which payment may be required from you, and to be advised no later than 30 calendar days from the date that MJHS-HPC becomes aware of any change in these payment expectations.

You have the right to receive this information verbally and/or in writing.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

39

SECTION 5

•Y ou have the right to expect that the concerns and needs of your family will be acknowledged.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

•Y ou have the right if you are not satisfied with care and services provided by MJHS Hospice & Palliative Care to: —C all (212) 649-5555 and ask to speak with our Administrator, on-call 24 hours a day to file a complaint if you have been unsuccessful in resolving your issues with the Hospice Interdisciplinary Team. Every effort will be made to resolve the complaint.

—A review of each complaint with a written response to all written complaints and to oral complaints, if requested by the individual making the oral complaint. Responses will be provided within 15 days of receipt of such complaint.

— Appeal the outcome of the agency’s complaint investigation through a review by a member or committee of the agency’s governing authority within 30 days of receipt of the appeal.

SECTION 5

—R egister a complaint with the New York State Department of Health Hotline (800) 628-5972 Monday through Friday, between the hours of 10:00 am and 4:00 pm or (212) 417-5888 Monday through Friday, between the hours of 9:00 am and 5:00 pm if not satisfied with services.

— Obtain the following information from the New York State Department of Health: n

ame, address, and Medicare provider number of Medicare Certified Home N Health and Hospice Agencies in NY state.

n

Date of the most recent surveys of any individual agency.

n

ecord of any condition-level deficiencies found regarding patient care in the R most recent survey conducted.

n

Dates and planned corrective actions for condition-level deficiencies.

n

Dates and types of sanctions imposed, if any, including termination.

•Y ou have the right to refuse participation in regulatory surveys or other special projects conducted by MJHS-HPC. •Y ou have the right to be informed of the name and function of any person/agency providing or coordinating care/services including ownership of the agency and the identity of other health care providers with which MJHS-HPC has contractual relationships, and to expect that staff members will listen to your voiced concerns and/ or complaints. This includes the right to be informed of all services MJHS-HPC or contracted agencies will provide.

•Y ou have the right to expect that your rights and responsibilities as they pertain to a patient lacking capacity will be followed by an individual, guardian or person legally authorized to represent you, should you be unable to represent yourself.

• You have the right to receive services regardless of sex, race, religion, ethnic background, sexual orientation/preference, handicap, creed, source of payment, national origin or color.

40

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Patient/Caregiver Responsibilities In order for MJHS-HPC staff to take the best possible care of you, we need your participation.

We expect that you will: •S hare complete and accurate health information, including present complaints, any pain issues, past illnesses, hospitalizations, medications, and previous pain management therapies or medications.

• I nform your RN Case Manager of any changes in your health status and make it known if you do not understand or cannot follow instructions. Ask questions about your care and/or service.

•P articipate in the development of your hospice Plan of Care and advise MJHS-HPC of any problems or dissatisfaction with your services.

•N otify MJHS-HPC staff of the existence of any changes made to your Advance Directives or Treatment Option Guidelines.

•N otify MJHS-HPC at (212) 649-5555 of any Emergency Room visits or hospitalizations on the day they occur.

•C ooperate with and be respectful of MJHS-HPC staff and property and do not discriminate against staff because of race, creed, color, sex, age, sexual orientation, religion, national origin or handicap.

•N otify MJHS-HPC if you receive services from any other agency or facility and/or if you have rental equipment which you no longer use. Your insurance will not cover hospice care from any other hospice program at the same time that you are receiving services from MJHS-HPC, unless authorized by MJHS-HPC. •N otify MJHS-HPC in advance whenever you will not be available at the time of your next scheduled hospice visit.

•B e responsible for your actions if you refuse treatment or do not follow MJHS-HPC instructions and/or Plan of Care.

•B e responsible for assuring that the financial obligations of your health care are fulfilled as promptly as possible.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

41

SECTION 5

•N otify MJHS-HPC of physician or diagnostic scheduled appointments and any changes made by your physicians. It is very important that you notify MJHS-HPC of any scheduled medical appointments or treatments outside the hospice Plan of Care.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Discrimination is Against the Law MJHS Hospice and Palliative Care Inc., complies with applicable federal civil rights laws and does not discriminate on the basis of race, color, national origin, age, disability or sex. MJHS Hospice and Palliative Care Inc., does not exclude people or treat them differently because of race, color, national origin, age, disability or sex.

MJHS Hospice and Palliative Care Inc.:

SECTION 5

• Provides free aids and services to people with disabilities to communicate effectively with us, such as: —Qualified sign language interpreters — Written information in other formats (large print, audio, accessible electronic formats, other formats) • Provides free language services to people whose primary language is not English, such as: —Qualified interpreters —Information written in other languages If you need these services, contact our Compliance Officer.

If you believe that MJHS Hospice and Palliative Care Inc., has failed to provide these services or discriminated in another way on the basis of race, color, national origin, age, disability or sex, you can file a grievance with: Compliance Officer 6323 Seventh Avenue, 3rd Floor Brooklyn NY, 11220 (855) 395-9169 Email: compliancehotline@mjhs.org You can file a grievance in person, by mail or email.

You can also file a civil rights complaint with the U.S. Department of Health and Human Services, Office for Civil Rights, electronically through the Office for Civil Rights Complaint Portal, available at https://ocrportal.hhs.gov/ocr/portal/lobby.jsf, or by mail or phone at: U.S. Department of Health and Human Services 200 Independence Avenue, SW Room 509F, HHH Building Washington, D.C. 20201 (800) 368-1019 (800) 537-7697 (TDD) Complaint forms are available at http://www.hhs.gov/ocr/office/file/index.html.

42

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Language Assistance

ATTENTION: If you speak a non-English language or require assistance in ASL, language assistance services, Tagline Informing Individuals with Limited English Proficiency of Language Assistance Services: free of charge, are available to you.

Call (718) 921-7900, (516) 239-2400 or (212) 649-5555 ATENCIÓN: si habla español, tiene a su disposición servicios gratuitos de asistencia lingüística. Llame al (212) 649-5555. (注意：如果您使用繁體中文，您可以免費獲得語言援助服務。請致電 (212) 649-5555. :      ,      .  (212) 649-5555.

ATANSYON: Si w pale Kreyòl Ayisyen, gen sèvis èd pou lang ki disponib gratis pou ou. Rele (212) 649-5555. 주의: 한국어를 사용하시는 경우, 언어 지원 서비스를 무료로 이용하실 수 있습니다. (212) 649-5555. 번으로 전화해 주십시오.

(212) 649-5555 (  .          ,    :     ,   ,       ।   (212) 649-5555. UWAGA: Jeeli mówisz po polsku, moesz skorzysta z bezpłatnej pomocy jzykowej. Zadzwo pod numer (212) 649-5555. 5555-649-(212).  ATTENTION : Si vous parlez français, des services d'aide linguistique vous sont proposés gratuitement. Appelez le (212) 649-5555.  (212) 649-5555.

PAUNAWA: Kung nagsasalita ka ng Tagalog, maaari kang gumamit ng mga serbisyo ng tulong sa wika nang walang bayad. Tumawag sa (212) 649-5555. :   ,   α α   ,   αα . α (212) 649-5555.

KUJDES: Nëse flitni shqip, për ju ka në dispozicion shërbime të asistencës gjuhësore, pa pagesë. Telefononi në (212) 649-5555.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

43

SECTION 5

ATTENZIONE: In caso la lingua parlata sia l'italiano, sono disponibili servizi di assistenza linguistica gratuiti.

Chiamare il numero (212) 649-5555.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 6

Medication and Infection Control Guidelines This section includes guidelines for: • Safe Disposal of Unused Medications • Infection Control in the Home • Safe Disposal of Medical Household Waste

Safe Disposal of Unused Medications There may come a time when your physician and/or the Hospice MD may prescribe controlled substances to treat pain and other uncontrolled symptoms.

SECTION 6

Controlled substances would include any medication pill bottle or container that is labeled with a controlled substance sticker that contains the following information and warning: “Caution: Federal Law Prohibits the Transfer of this Drug …”

It is very important that you dispose of these drugs as per the instructions given here. Please contact your RN Case Manager if you have any questions regarding the disposal of controlled substances or any other medications.

44

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Government Approved Guidelines for Safe Disposal of Prescription Drugs 1. Take unused, unneeded or expired prescription drugs out of their original containers.

2. Mix the prescription drugs with an undesirable substance, like used coffee grounds, kitty litter or detergent, and put them in an impermeable, nondescript container, such as empty cans or sealable bags, further ensuring that these drugs are not diverted or accidentally ingested by children or pets.

3. Throw these containers in the trash.

4. The patient’s caregiver may return unused, unneeded or expired prescription drugs to pharmaceutical take-back locations that allow the public to bring unused drugs to a central location for safe disposal.

5. Flush prescription drugs down the toilet ONLY if the accompanying patient information specifically instructs it is safe to do so.

6. The FDA advises that the following drugs be flushed down the toilet instead of thrown in the trash: • Actiq (fentanyl citrate) • Daytrana Transdermal Patch (methylphenidate) SECTION 6

• Duragesic Transdermal System (fentanyl) • OxyContin Tablets (oxycodone) • Avinza Capsules (morphine sulfate) • Baraclude Tablets (entecavir) • Reyataz Capsules (atazanavir sulfate) • Tequin Tablets (gatifloxacin) • Zerit for Oral Solution (stavudine) • Meperidine HCL Tablets • Percocet (oxycodone and acetaminophen) • Xyrem (sodium oxybate) • Fentora (fentanyl buccal tablet)

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

45

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Infection Control in the Home If a member of the family has an infection, they may risk spreading it to a person who is “at risk.” It is important that the patient’s home and surroundings are always kept as clean as possible. Take these steps to prevent infection in the home: •A lways wash your hands before and after patient care, after touching patient equipment, after removal of gloves, after toileting and before eating.

•U se clean, disposable (not sterile) gloves to assist with care when bodily fluids will be contacted.

•G owns may be worn if there is a chance your clothes may be soiled; masks are not necessary unless specifically instructed to use them.

• Toothbrushes and razors should not be shared, since bleeding may occur during use.

•W ash soiled tabletops, toilets, showers and floors with hot, soapy water, then disinfect with a solution of one part bleach and ten parts water.

SECTION 6

Safe Disposal of Medical Household Waste Medical household waste is any disposable item used when providing patient care in the home that has been soiled by blood, body fluids and/or body waste (that is, urine, feces, vomit, blood). Examples of this waste are used gauze bandages, dressings, disposable diapers, under-pads, tissues and disposable gloves.

• Use gloves when providing patient care or handling items soiled with blood/body fluids.

• Household waste is disposed of in the regular garbage and not recycled.

• Always keep a waste container near the patient’s bed.

•F or disposal of soiled bandages, dressings, diapers, under-pads, tissues or other disposable equipment (except needles, syringes and sharps), use two plastic bags to line the waste container and, when full, close securely and place in the regular garbage.

• Always dispose of feces, urine and vomit in the toilet and flush.

Poison Control Center: In NYC: (212) POISONS (764-7667) | Nassau County TDD: (516) 747-3323

46

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

How to Dispose of Needles, Syringes and Surgical Instruments: •D ispose of needles, syringes and surgical instruments immediately in an appropriate container. Please call our office if a container is needed.

•A n appropriate container is something opaque, puncture-resistant and leak-proof with a screw-on top. Hard plastic laundry detergent, bleach or fabric softener containers are perfect.

•S tore the container near the area where needles, syringes or surgical instruments (sharps) will be used.

• Store the container in an upright position and out of the reach of children.

•W hen the container is full and ready for disposal, screw the top on tightly, label it “Needles, Sharps,” place in double plastic bags, and place in the regular garbage for pickup.

For Safety Reasons Do Not: • Use glass containers to store or throw out needles, syringes or other sharps.

• Use metal coffee cans to store sharps because the lids can easily fall off.

SECTION 6

• Bend, break or re-cap contaminated needles or sharps.

•T hrow needles, syringes or sharps into the household garbage because someone might get stuck.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

47

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 7

Safety in the Home Emergency Telephone Numbers 1. MJHS Hospice & Palliative Care can be reached 24 hours a day 7 days a week.

Bronx/Manhattan: (212) 649-5555 Brooklyn: (718) 921-7900 Queens/Nassau: (516) 239-2400 2. Electric System emergency number: In NYC: (800) 75-CONED or (800) 752-6633 Nassau County: PSEG (800) 490-0025 3. Gas System emergency number: In NYC: Con Ed Customers: (800) 75-CONED or (800) 752-6633 In NYC: National Grid Customers: (718) 643-4050 In Nassau County: National Grid (800) 867-5222 4. Telephone emergency number in NYC & Nassau County: 911 5. Suicide Prevention Hotline:

SECTION 7

(800) LIFENET (543-3638) (212) 673-3000 (800) SUICIDE (784-2433) 6. Long Island Crisis Center: (516) 679-1111 (Nassau) 7. Health Department: Nassau County: (516) 227-9715

48

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Home Safety Guidelines It is important to have a plan in case of an emergency, and to prepare to be safe in the home.

The guidelines in this section will cover: • Fire Safety

• Falls Prevention

• Oxygen Safety Please ensure that: •T here is a safe, systematic orderly evacuation plan for all occupants from the premises to a safe area in the least amount of time in the event of an emergency.

•T here are fire safety mechanisms in place and in good working order in case of an emergency.

• There are mechanisms/appliances available to prevent fire accidents.

•T he dwelling is in compliance with all applicable local and state departments of health and fire codes.

Family Self-Assessment The type of home dwelling (Please check all that apply):

q Private Home:

q 1 floor q 2 floors q 3 floors q Apartment Complex:

SECTION 7

q One to six floors q Six or more floors

q Elevated OR q Un-elevated (walk up) building.

q Nursing home or Institution

q One to six floors q Six or more floors

q Building structure:

q Wood / Frame q Brick / Stucco q Cement / Concrete

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

49

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Fire/Safety Questions to Follow for Guidelines to a Safe Home: • Are your exit areas clearly marked and known by all members of your family?

• Are the exit areas easily opened and uncluttered for swift evacuations?

• Are there fire escapes and are they in good working order?

• Do you have smoke detectors in your home and/or hallway?

• Do you have fire extinguishers and are they in good working order?

•D o you have the name of your landlord and telephone number easily accessible for emergencies?

•D oes anyone, such as a neighbor, have an extra apartment / house key in the event of an emergency?

• Do you have any fire/safety hazards in your home now? (see examples below) • Do you/your family know how to change fuses in electric box or contact someone who can?

•D o you/your family know how to shut off the furnace and water, or trip the circuit breakers in an emergency?

Examples of Fire Hazards in the Home • Chemicals stored near heat.

• Smoking within six feet of oxygen concentrator or tank.

• Newspaper/rags stored near heat or left cluttered around home.

• Smoking in bed or lying down without supervision.

SECTION 7

•S tove-top forgetfulness— leaving food/fluid unattended. HINT: buy an electric kettle that has an automatic shut-off when hot.

• Wiring left to run across floor, or frayed wiring.

• Too many plugs into one outlet, which may overload the circuits.

• Electric oxygen concentrator is not the only plug used in an outlet.

Fire Tips Important to Remember!

R. A. C. E. Rescue—Use staircases NOT elevator. Evacuate two floors below the fire. Remain close to the floor. Always feel door with hand before opening. If door is hot, DO NOT OPEN! Alarm—Go outside to press the fire alarm if able. Dial 911.

Confine—Close door and windows of fire area if able. If not then, close all other exit doors when leaving.

Extinguish—If a fire extinguisher is available— pull pin, aim nozzle, squeeze lever and sweep at base of the fire.

50

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Oxygen Safety Always use oxygen carefully. Oxygen is a safe gas when used properly. Although oxygen does not burn, it does support combustion. Follow these safety precautions when you are using oxygen from any source (examples are oxygen tank, oxygen concentrator, portable oxygen, etc.)

•N otify the fire department and the electric company that you are using oxygen. (Place “Oxygen in Use” signs in a visible area.)

•N ever place the tank or machine near an open flame (e.g., matches, lit candles, a stove in use). It should be kept at least six feet away.

• Always turn your oxygen off when not in use.

•A lways check the oxygen levels on your oxygen tank. This includes the backup tank as well as the tank that is in use.

•T he oxygen backup tank should be stored lying flat (or upright and secured) and in a safe, well-ventilated place.

•C heck the oxygen tubing for cracks and leaks. Clean the nasal prongs to keep them open. Check the prongs daily.

•N ever smoke when the oxygen source is in your residence. Don’t allow anyone else to smoke. Always have a “No Smoking” sign posted in a visible spot.

•D o not use your oxygen within six feet of electrical appliances, especially stoves, heaters, toasters and hair dryers.

•D o not use your oxygen in an area where combustible materials such as oils, greases, aerosol sprays, lotions or solvents are present.

•D o not use petroleum-based products while oxygen is in use. Avoid the use of products that contain alcohol (e.g., skin products).

SECTION 7

•G et into the habit of checking the batteries of your smoke detector every month and change batteries as needed.

• Call the Durable Medical Equipment (DME) company for service or any questions you might have.

• Have fire extinguishers on hand.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

51

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Oxygen Concentrator Here are some reminders for using your oxygen concentrator. The guidelines for using oxygen safely should be included as part of your review of these reminders.

• Do not use an extension cord with the concentrator. The concentrator should be plugged into a grounded electrical outlet.

• Do not plug it into an outlet used by other appliances.

• Never place anything on the top of the concentrator such as drinks, plants, or books.

• Never place the concentrator against the wall, curtains, or in a closet. Room air must freely flow into the unit.

• Check the alarm unit on a regular basis. This can be done by pulling the plug and listening for the alarm tone.

• The filter for the oxygen concentrator should be inspected regularly. Report any concerns to the vendor that is listed on the concentrator unit.

Oxygen Tank Certain safety rules apply WHENEVER you use oxygen from a tank. Please review the general guidelines for using oxygen safely in addition to following these reminders.

• Check the gauge to confirm the correct flow of oxygen. Check the amount of oxygen available if you are using oxygen from a tank.

• Turn the gauge to begin the flow of the oxygen and adjust the flow.

SECTION 7

Portable Oxygen There are different types of portable oxygen units. You may be using a tank or a portable compressed oxygen unit. Certain safety rules apply regardless of which type of oxygen you are using.

• Check the gauge to confirm the correct flow of oxygen. Check the amount of oxygen available if you are using oxygen from a tank.

• Turn the gauge to begin the flow of the oxygen and adjust the flow.

• When traveling by car, do not allow anyone to smoke in the car. Keep the window slightly open.

• Place your oxygen unit on the floor next to you or on the seat next to you. It is a good idea to secure the oxygen unit with a seatbelt whenever possible.

• Never leave portable oxygen in a car parked in the hot sun.

• If you are planning to travel by bus, train, air, or boat you should call the transportation provider ahead of time to find out if there are any restrictions on traveling with oxygen.

• Notify your health care provider before going on anything other than a short trip. You may also need to notify your oxygen supply company. You will need to ensure that you have enough oxygen and may need to arrange for additional oxygen at your destination.

52

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Fall Prevention Falls are a common occurrence in the older population. Complications from a fall may lead to fracture, hospitalizations, rehabilitation and/or long-term care. Most falls happen between the hours of 6:00 a.m. to 10:00 a.m. and 4:00 p.m. and 8:00 p.m.

These guidelines have been provided to help reduce the risk of falling. No one is free from the risk of a fall—it can happen to you! Be sure to tell your hospice nurse or other caregiver as soon as possible if you experience a fall.

Please read these tips and remember to follow them. We need your cooperation to help keep you safe.

•R equest assistance when you need to get up from your chair or bed or when doing activities you know you cannot do alone.

• Sit at the edge of the bed before standing to reduce dizziness.

•T ake your time when moving around—do not rush! Use a walker or cane as recommended by your physician if you have unsteady movement.

•T urn the lights on as you enter rooms and hallways and use nightlights. Adequate lighting will reduce the chance of falls.

• Keep the items you use most often at arm’s reach (that is, remote, light, telephone, water, etc.)

•E quip the bathroom with safety bars, tub chairs, non-skid mats or tape for tub floor surface.

SECTION 7

•R emove the clutter from your living space, which may create a hazard (that is, scatter rugs, excessive furniture, electrical cords on the floor, etc.). Remove scatter rugs that don’t have proper tape backing.

• Wear supportive shoes and properly fitted clothing.

• Wear hearing aids or glasses while you are awake if ordered by your physician.

•M ove your bedroom space to the same floor as your daily living space. Consider an electric hospital bed with side rails.

• Ask your doctor or nurse which medications may make you feel drowsy or less alert.

•K now your own limitations! Discuss your concerns with your health care provider and your family.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

53

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 8

What to Expect from Your Home Health Aide MJHS Hospice & Palliative Care may provide a certified Home Health Aide to assist in the provision of care to meet your basic needs. We want you to feel confident in the care you receive. Please review these expectations regarding the role of the Home Health Aide so you can gain the most from his or her help.

•T he aide should come to your home promptly. However, for the first day of service or during bad weather, please allow an additional one half-hour for travel time.

•T he aide is required to wear identification from the agency and be well groomed in appearance at all times.

•T he aide has already been given information on your care needs. Please call our office immediately if you are not confident in the care being provided to you for any reason.

• A care plan completed by the hospice nurse should be kept on your refrigerator or in another visible place. The aide will refer to this Plan of Care for information on your care needs.

Please call our office immediately to update your Plan of Care if your care needs change.

Services a Home Health Aide may provide involve caring for the patient—not the whole family.

A Home Health Aide may: • Assist with bathing and personal hygiene.

•A ssist with transfers from bed to wheelchair, walker, toilet, etc.

• Change bed linens for the patient.

•A ssist with meal preparation and special diets for the patient.

• Do laundry for the patient.

SECTION 8

•D o some grocery shopping at the nearest store for the patient.

•P erform light housekeeping of the patient use areas.

54

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

A Home Health Aide may NOT: • Give medications to the patient.

•D o heavy housekeeping like scrubbing floors or washing walls/windows.

• Move heavy furniture.

• Handle finances.

• Transport the patient in his or her car.

•U se the telephone other than to call his or her agency.

•S ign the Home Health Aide care plan for more than the current day of service.

SECTION 8

•H ave his or her own visitors while they is in your home. Please call our office immediately if anyone other than the Home Health Aide comes to your door.

•L eave you unattended at the end of his/her shift. If your caregiver is out and not able to be back home when the aide is scheduled to leave, please call our office.

•E at your food. However, he or she can bring in breakfast or lunch unless there are any dietary restrictions in the home or for the patient. If there are, please notify our office immediately so appropriate arrangements can be made.

If you have any pets, please tell our nurse and use discretion in keeping them safely out of the aide’s work area.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

55

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 9

A Caregiver’s Guide Being a caregiver for someone during the latter phase of life can be both rewarding and challenging. It is common and normal for caregivers to experience a wide range of emotions with many ups and downs. Over time, there will be changes in your loved one’s habits, preferences, and condition that may cause concern, but please be assured that these changes can be a part of a natural progression. We are here to help you understand what is happening and to help coach you through these changes so that you feel confident that your loved one is comfortable and receiving the best possible care.

This section will help provide some helpful caregiving information and tips regarding some of the symptoms you may encounter when taking care of your loved one, such as: • Appetite and nutrition.

• Stomach digestion and bowels.

• Pain and comfort.

• Surges of energy levels.

• Behavior changes.

• Breathing changes.

• Potential for bleeding.

• The progression of advanced illness.

• Practical planning.

• Taking care of yourself, the caregiver.

SECTION 9

Please remember you are not alone. We are here to help you.

56

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Taking Care of Yourself, the Caregiver Please remember that in order for you to provide your best, you must take care of yourself.

Finding ways to alleviate stress levels is beneficial so you can focus on the essence of all the good in what you are doing.

Take Care of Yourself Emotionally •T ake a break at least once a day (go outside, even if for just a few minutes; take a walk, read a book, see friends or go to a movie).

• Talk about how you feel with friends and family; join a support group.

•A sk for help and let others help you—keep a list of things that need to be done so you can more easily delegate. People want to help.

• Take a deep breath several times throughout the day.

Take Care of Yourself Physically • Eat a healthy, balanced diet at regular intervals and drink plenty of water.

• Avoid using alcohol, drugs, cigarettes or food to cope.

• Keep an exercise routine—at least 20 minutes a day of physical activity, like walking.

• Keep any medical appointments.

•B e sure you are getting enough rest and sleeping well. Please tell your doctor if you are having trouble sleeping.

Prepare Yourself for What to Expect The following pages will give you an idea of what to expect when taking care of a loved one and provide you with tips on how to manage the situation.

SECTION 9

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

57

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Appetite and Nutrition A decrease in the appetite of your loved one can be a source of concern for some caregivers, but please be assured that a gradual loss of interest in food is a natural part of the disease progression. Please know that your loved one’s feelings of thirst and hunger will go away—he or she is not starving. Please remember to not force food or water on your loved one when they refuses it.

Here are some tips as you care for your loved one’s nutritional needs.

Tips for Loss of Appetite or When Food Preferences Change • Offer smaller portions or more frequent, smaller meals.

• If three meals during the day is not appetizing, offer nutritional snacks throughout the day.

• Offer liquids in between meals, not immediately before them.

• Prepare favorite foods or foods that appeal; avoid foods of non-calorie value.

• Prepare the day’s biggest meal whenever it is most suitable for the patient (if he or she eats most at breakfast time, have the day’s largest meal at that time).

• Try to avoid eating the largest meal last.

• Provide a relaxing, enjoyable atmosphere at meal time.

• Eating is a form of socialization; sitting with someone promotes a better appetite.

• Enhance flavor by marinating foods in fruit juice, sweet and sour sauce or salad dressing.

• Experiment with seasonings such as mint, curry, basil, oregano or rosemary.

• Be sure to check with your doctor about any food restrictions.

Tips for Sore Mouth/Throat • Avoid acidic foods such as tomatoes, orange juice or salt.

• Use a straw for drinking.

• Try foods and beverages at room temperature.

• Add butter, gravy, sauce or broth to make swallowing easier.

Tips to Avoid Dry Mouth • Offer soft foods, add liquids or puréed foods.

• Use hard candy to stimulate saliva.

SECTION 9

• Sip on water as able to, including ices and ice pops, etc., unless otherwise restricted.

•C lean the mouth/teeth by using an extra soft toothbrush or foam swab; apply lip balm frequently.

• Avoid mouth swabs that contain alcohol as they will further dry the mouth.

58

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Stomach Digestion and Bowels Changes in diet, decreased physical activity, and side effects from certain medications can contribute to changes in your loved one’s digestion, urination and bowel movements. Nausea is a common side effect for individuals just starting a new pain medication. This usually passes in a few days. Here are some tips for you to help manage any discomfort your loved one may be feeling:

Tips for Nausea or Vomiting • Try circulating fresh air by turning on a fan or opening a window.

• Apply a cool compress to the forehead.

• Offer small sips of clear beverages such as ginger ale, seltzer or broth.

• Offer food at moderate or room temperature.

•O ffer high-carbohydrate foods such as white toast, crackers and dry cereal; avoid fatty and spicy foods and preparing foods with strong odors.

• Drink cold water or carbonated beverages between meals rather than during meals.

• Rest after eating; don’t lie flat for at least one hour after eating.

• Ask your RN Case Manager about anti-nausea or vomiting medication.

Tips to Avoid Constipation • Increase your fluid intake; offer a hot beverage in the morning.

•G radually increase the fiber in your meal planning, including fresh fruits and vegetables, whole grains and dried fruits.

•A dd unprocessed bran to soups, cooked cereals and casseroles (start with two teaspoons of bran per day and gradually increase to two tablespoons per day).

• Offer snack foods that include popcorn, dried fruits and nuts.

• Ask your RN Case Manager about laxative and stool softener use.

Tips for Incontinence • Keep the person clean and dry using under-pads or disposable adult diapers.

• Apply lotions or creams as recommended by your hospice nurse.

• Be sure to preserve the patient’s dignity with privacy when changing pads or diapers.

• Your nurse or doctor may recommend a catheter for problems with urination.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

59

SECTION 9

•K eep a log of changes in activity (frequency of bowel movements and urination; color of urine, any blood in discharge).

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Tips to Avoid Diarrhea • Limit high-fiber foods such as fruits, vegetables, and whole grains.

•E at bland, soft foods such as rice, noodles, mashed potatoes, white toast, bananas, and tender meats.

• Avoid gaseous foods such as cabbage, beans, corn, spices.

• Avoid milk and milk products.

• Avoid caffeine and alcohol.

• Drink liquids at moderate temperatures.

• Eat foods at moderate temperatures.

• Avoid anything that over-stimulates the colon.

Pain And Comfort Our hospice team is highly skilled at assessing and managing pain. Your loved one’s comfort is our number one goal. Please be sure to call us immediately if there are significant changes in your loved one’s level of comfort or condition. Changes in mood (short tempered or cranky) and fidgeting can also be signs of discomfort.

Tips for Proactively Managing Your Loved One’s Comfort •R emember, everyone’s perception of pain is different. Always believe your loved one if they is expressing discomfort.

• Several times a day, ask your loved one how they is feeling. Speak slowly, directly and calmly.

•R ecord specific information about pain in the journal on page 15; be sure to show the journal to hospice team members.

• Set a timer when medication is due to be given.

• Ensure you have an adequate supply of medication on hand.

Tips for Managing Physical Discomfort • Try shifting your loved one’s position in bed.

• Adjust blankets and pillows (prop up body with pillows).

• Play soothing music.

• Decrease stimulation in the room (lower lights, lower sound of music/TV).

SECTION 9

• Rub back or massage hands.

• Try a distraction with a favorite activity or food.

•C heck to see when the last dose of medication was given; give another dose if it is close to the time for the next dose.

• Call your hospice team if there continues to be significant discomfort.

60

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Surges in Energy Levels People living with an advanced illness may experience a loss of interest in activities they once enjoyed. It is expected and normal for activity and energy levels to decrease over time. The chronically or terminally ill may act more tired and sleep for longer periods of time, may have difficulty waking up, remaining alert or may even lie awake all night. There may be periods of time when they have surges of energy when they had been sleeping for days. Please remember that all of this is normal and that your presence and companionship is an important part of helping them.

Tips for Changes in Sleep Patterns • Check side effects of medications to see if they are causing drowsiness.

• For insomnia, create a soothing environment (dim lights, play soft music).

• For continued insomnia, be sure to ask for help from family and friends so you can rest.

• Inform your nurse or physician of unusual sleep patterns.

Tips for Surges of Energy • Enjoy this time together.

• Hold hands.

• Tell stories and remember good times together.

• Prepare their favorite foods.

• Take this opportunity while they are alert to say or do what you need to do; say goodbye.

• Some people say they are sorry, share forgiveness or let go of conflicts.

• Some people share their love and gratitude.

Behavior Changes Over time, people with an advanced illness may become confused about time, where they are physically located, and may even hallucinate. Many become restless and may make statements like they are “ready to go somewhere,” make references to train or bus stations or look for their car keys. Consider that this may be a symbolic representation of the process and do your best to calmly reassure them. Other times, your loved-one may appear angry or say mean things. It may be easier said than done, but try not to take it personally.

SECTION 9

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

61

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Tips for Behavior Changes • Stay calm and loving; speak slowly.

• Give reassurance that your loved one is safe; hold hands; sit with the person until he or she is calm.

• Gently remind your loved one of who you are; point to pictures or things to reorient him or her.

•L isten to your loved one’s statements for something meaningful; do not argue; acknowledge his or her feelings and experiences, particularly if they are pleasant recollections or visions.

• Respond calmly and respectfully to comments and questions.

• Always talk as if the person can hear you, even if he or she doesn’t appear to be listening.

• Check the last time medication was given.

• Assess the safety of the situation and avoid falls.

• Be sure to tell your hospice team about prolonged agitation or restlessness.

Breathing Changes There may be short periods of time when your loved one experiences some shortness of breath (gasping) or breathing too fast. He or she may make gurgling sounds. These breathing changes can be due to fluids or mucus that have built up in the body. Often these changes are not uncomfortable and will pass within a minute or so. If your loved one is aware of the changes, feelings of breathlessness or breathing too fast can be distressing for you both until it passes.

Tips for Breathing Changes •C hange position by raising your loved one’s head a bit higher or turning your loved one onto his/her side.

•C oach him/her to focus on relaxing; use a calm voice and speak slowly, giving instructions to take slow, deep breaths.

• Open the window or turn on the air conditioning to keep the room cool.

• If possible, arrange the bed so they can look out the window.

• Point a fan in the direction of his/her upper body.

• Provide a distraction (favorite music, TV or reading).

• Loosen any clothing that may appear too tight.

• I f using oxygen, check that the tubes are not kinked and that the mask and flow rate is correct.

SECTION 9

•B e sure to tell your hospice team about these breathing changes, especially if you notice particularly labored breathing. They may prescribe or change medications to provide comfort.

62

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Potential for Bleeding Bleeding for patients with an advanced illness is rare; however, it can occur in some patients for many different reasons. It may be because of clotting disorders, tumors that erode or wear away the blood vessels and ulcers. It can feel distressing to care for someone who is experiencing bleeding. Please know that your hospice team is here to help support you through this process.

Signs of Bleeding • Previous bleeding from any site on the body, including gums • Blood-tinged coughing or vomiting • Blood in urine or stool • Nose bleeds • Skin with excessive bruising or many pinpoint-sized red areas on the skin

Tips For Bleeding • Keep air humidified.

• Have bandages/dressings available to apply as directed by your care team.

•K eep dark-colored towels or blankets and waterproof under-pads on hand in the event that bleeding occurs.

•K eep non-sterile gloves in the home to use if you need to clean up after any bleeding episodes.

•D iscuss medications with your hospice team. Some medications can cause bleeding.

Other medications can help lessen the problem.

Call us right away if you notice any change in frequency or quantity of bleeding.

SECTION 9

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

63

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

The Progression of Advanced Illness While each individual’s experience is different, there are some signs and symptoms that can signal the final weeks, days, and hours. The individual may be bed-bound and show both physical and emotional changes. Most of the time, they will not be aware of these signs and symptoms. Your companionship and support is important during this process.

One to Two Weeks Prior • Changes in blood pressure and heart rate • Continued loss of appetite and thirst • Decline in urination and bowel output • Fluctuations in body temperature; hot/cold • Constant fatigue • Changes in sleep and awake patterns • Disorientation, confusion, hallucinations (visions): seeing or talking to people who aren’t there • Use of symbolic language (e.g., “I have to go home.”)

Days and Hours Prior • Will not want to eat or drink • Very little or no urination or bowel output • Hard to detect heart beat; further decrease in blood pressure • Changes in breathing with stops and starts; it may be noisy as mucus collects in throat •B ody temperature will drop and the hands/feet/knees will be discolored with decrease in blood circulation • Eyes may become teary or glazed •W hile many are unresponsive during this time, some may experience heightened periods of activity and confusion, or conversely a period of clarity or lucidity.

When it is Time • No breathing • No response to your touch or voice • Eyes and mouth may be open (pupils unresponsive; relaxed jaw) SECTION 9

• Sometimes there is a loss of bladder/bowel control Remember that each person is different and that the most you can do is to be there to support your loved one during this transition. While you may have been preparing yourself for this moment for some time, it can still be very difficult and feel overwhelming. Please remember, you are not alone; we are here to support you. Please call us at (212) 649-5555, (718) 921-7900 or (516) 239-2400.

64

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Practical Planning There are many things you can do to plan ahead for your loved one’s passing that will allow you to be able to focus on remembering them and help alleviate some stress. Our Social Workers can help you navigate the practical, social and financial matters that will be needed or lie ahead.

Tips for Planning Ahead • Make a plan for calling family and friends. Have a list of names and phone numbers ready.

•A rrange for a power of attorney (POA) and include that person’s name on any bank accounts, credit cards, etc. This can help with complications down the road.

•L ocate important papers (Social Security card, birth and marriage certificates, military discharge papers, Veterans Administration claim number, insurance cards, identification, insurance policies, safe-deposit boxes, business agreements, bankbooks, security certificates (stocks, bonds and savings certificates) real estate deeds, renter’s agreements, wills, recent copies of income tax return forms, W-2 forms and other records of earnings, automobile registration, installment payment books, etc.).

•M ake arrangements for a funeral or service. Funeral directors will meet with you in advance to help you with all the details.

At the Time of Death •P lease notify MJHS Hospice and Palliative Care immediately so we can offer our support: q Bronx/Manhattan: (212) 649-5555 q Brooklyn: (718) 921-7900 q Queens/Nassau: (516) 239-2400 • Make phone calls to family and friends. Consider asking someone to help you.

•R eview funeral plans and call a funeral director. Our staff can assist you with this if you need help.

SECTION 9

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

65

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Other Practical Things You Can Do: • Determine if you are placing an obituary notice.

• Contact attorney, accountant, and executor of estate.

•D etermine the number of certified death certificates you will need. These will be needed to close accounts. Your funeral director may be able to help you with these tasks.

•C ontact the Social Security Administration and any other agency that had been making monthly payments to your loved one. The Social Security Administration phone number is 1-800-772-1213. Ask if survivors are entitled to any further benefits.

• Contact the Veterans Administration because they may offer benefits for funeral and burial costs. Stop any monthly payments that the VA had been making to your loved one.

• Contact any life insurance companies to file a claim.

• Cancel phone, utility, and cable services, as necessary •N otify credit card companies, installment loans, and service contracts providers.

Sometimes these accounts are covered by credit life insurance, which pays off the account balance in the event of the death of the customer. If bills are not covered by credit life insurance, consult with an advisor as the debt is generally paid out of the estate. In the case of a joint account, you might remain responsible for the debt.

• Notify the post office and cancel subscriptions.

•F or patients with Medicaid, our social worker can provide you with the contact information regarding HRA Burial Claims Department and the reimbursement program.

We are Here to Help with Immediate Assistance: •O ur staff will remain available to you and can be contacted at the number below, 24 hours a day, 7 days a week. We are here to answer any questions or concerns you might have and to provide you with any support you might need.

SECTION 9

•O ur Bereavement Counselors will be contacting you in the next four to six weeks to offer bereavement counseling. Should you want to participate, we facilitate bereavement groups in the five boroughs of New York City. If you live outside the NYC area, we can connect you to a bereavement group near your home. If a group does not interest you, we can offer individual sessions and will connect you with a therapist if you need longterm support.

66

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

Medicine Dropper Teaching Tool for Roxanol or Oxyfast (Liquid Only) INSTRUCTIONS 1. Squeeze air from bulb before putting tube into medicine.

BULB

2. Lift bottle and dropper to eye level.

3. Draw up more medicine than you need by slowly releasing the bulb.

Squeeze excess back into bottle until medicine reaches the proper line on the tube.

4. Maintain pressure on bulb to prevent bubbles* from entering tube.

5. Squeeze bulb to release medicine under tongue or into receptacle.

1.0 ml = 20 mgs

* Bubbles are not harmful but may prevent you from giving the proper dose.

A calibrated dropper like this one will come with each bottle of Roxanol or OxyFast.

These medications are used for pain relief and the control of certain problems with breathing.

Your RN will inform you of dosages that the physician has ordered.

ROXANOL 20 milligrams per milliliter

TUBE

0.5 ml = 10 mgs

0.25 ml = 5 mgs

HINTS: 1 milliliter is a very, very small amount of liquid. It may be hard to measure 0.25 milliliters.

Take your time and follow the instructions. Your nurse will demonstrate the process when necessary. You can practice first with water to get comfortable with how to measure.

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

67

SECTION 9

OXYFAST 20 milligrams per milliliter

0.75 ml = 15 mgs

PATIENT AND FAMILY GUIDE BOOK | LIVING WITH PEACE AND CONFIDENCE

SECTION 10

Contacting Us While we cannot physically be with you and your family all the time, please be assured that we are available 24 hours a day, 7 days a week to provide support by calling: • Bronx/Manhattan: (212) 649-5555 • Brooklyn: (718) 921-7900 • Queens/Nassau: (516) 239-2400 Please remember that it is very important that you call us: • Before going to the Emergency Room or hospital.

• If you are experiencing uncontrolled symptoms.

• If your condition changes and requires evaluation and treatment.

• If you or a family member is experiencing emotional distress.

• Before ordering disease-related lab work, imaging physician or specialist consultations.

• For any changes in insurance.

• If your address changes.

Your hospice care team’s regular hours are generally from 8:30 a.m.—5:00 p.m., Monday through Friday.

This is the best time to: • Order equipment, supplies or oxygen.

• Request medication refills.

• Request changes in Home Health Aide services.

• Ask questions about scheduled staff visits.

If you are experiencing an emergency, call us right away.

•T his can be a time of worry and we are here to help you through it no matter what time of day or day of the week.

•W e have an on-call team of professionals to assess your concerns and determine whether an emergency home visit is needed. It is very important to remember to stay calm and answer questions so we can help you.

SECTION 10

• I f it is decided that an urgent visit is needed, we will let you know how long it will take for that person to arrive.

68

MJHS HOSPICE AND PALLIATIVE CARE (212) 649-5555 | (718) 921-7900 | (516) 239-2400.

Notes:

Notes:

_____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________

_____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________ _____________________________________________________

HA.17.v1

MJHS was founded in 1907 by The Four Brooklyn Ladies based on the core values of compassion, dignity and respect. With the help of charitable support, they provided poor, elderly members of the community with quality health care and a safe place to live in their times of greatest need.

From a small building among the tenements, MJHS has become one of the largest and most innovative charitable not-for-profit health systems in the region.

Living With Peace And Confidence Patient And Family Guide Book

Today, our programs and services for people of all religious, cultural and economic backgrounds include: home care, hospice and palliative care for adults and children; an award-winning center for rehabilitation and nursing care, Menorah; health plans for at-risk members of the community; and the research-based MJHS Institute for Innovation in Palliative Care.

As a not-for-profit organization, many of our programs and services are made possible, in part, through support to the MJHS Foundation. The generosity of grateful families, private and corporate donors, grants, as well as our own employees, support our specialized services not reimbursed by government programs or private insurance.

To learn more about MJHS or to support our not-for-profit services visit www.mjhs.org

Home Care | Hospice and Palliative Care | Menorah Center for Rehabilitation and Nursing Care Elderplan/HomeFirst | Institute for Innovation in Palliative Care | Foundation www.mjhs.org | 1-855-385-8930

FOR IMMEDIATE ASSISTANCE PLEASE CALL

(212) 649-5555

Stay in touch with us! @MJHS01