Wishes | A Gift of Decisions on End of Life

A Guide for Planners and Caregivers

Including:

• Planning For End-of-Life Care • How Hospice Works • Arranging Your Affairs

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For more information, please call 540266-6000 or 800-964-9300, or visit: Carilion Clinic.org/ hospice.

N

o one likes to think about the end of life, but it’s a reality we all face.

And while planning for end-oflife care takes time and energy, it relieves the decision-making burden from our loved ones and creates the opportunity for more peace-filled final days.

I can’t emphasize how important it is.

The advance-care planning process helps adults at any age or stage of health clarify wishes, needs and preferences so that future medical care will match personal values, life goals and desires.

Carilion serves our patients best by acknowledging and embracing the changing needs throughout their lifetimes. That includes end-of-life care and hospice. It’s a normal part of care, not something to be feared.

This collection of articles and resources titled “Wishes: A Gift of Decisions on End of Life” is just that. A gift. It will help you take the first step to create your own end-of-life care plan. You’ll learn about your options, the important decisions you’ll need to make, and who should be involved.

I encourage you to get started now so you can avoid having to make hard choices later –— or putting others in the position to make them for you. At the end of life, when the important things like family and faith come into focus, you can trust that we’ll support you and those close to you.

Thank you for giving Carilion Clinic Hospice and The Roanoke Times this opportunity to help you make the end of life the pinnacle of a life well lived.

With gratitude,

From our office in Roanoke, Virginia, our firm of four attorneys and seven support staff serves clients throughout Southwest Virginia. We understand that change, the one common element of our lives, presents us with many challenges.

We practice in the areas of:

Business Law Estate Planning Estate & Trust Administration Guardian ad litem Elder Law Special Needs Trusts Tax Planning Our purpose is to stand alongside our clients as their trusted advisors and meet life’s challenges together. We provide expert and specific legal advice to our clients and do so in a responsive and prompt manner.

Please allow us the privilege of meeting with you and exploring how we can forge a relationship that will meet your needs now and in the future.

Authorized by Mark Dellinger, Esq.

Nancy Howell Agee

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Welcome From Nancy Howell Agee

3

Contents advice for

advice for

Everyone 6

Caregivers 12

Death Over Dinner The end of life can be tough to talk about.

Start with a good meal.

8

14

Hospice 101 Hospice isn’t about giving up. It’s about making the most of your time.

Caregiving 101 Taking over for a loved one means making time, for them and yourself.

Long Distance Caregiving How to be there for a loved one when you’re far away.

16

What Not To Say In a difficult time, how to use language that encourages.

18

Helping Children Kids will figure it out — be honest with them from the start.

advice for

Planners 20

Advance planning will ensure your wishes will be honored.

24

28

30

Final Wishes: A Series on Life’s Last Journey from Roanoke Times reporter Luanne Rife examines the benefits and challenges of the end-of-life care system in Southwest Virginia. Find more on this subject at roanoke.com.

Make sure your assets are handled how you want them to be.

Hospice workers aim to make the most of a person’s last days. 34

Preparing For Your Death

Hospice houses give

Medical Plans Your doctor can help plan the best course of end-of-life care.

Funeral Plans Arranging things now can help ease stress on your loved ones when the time comes.

people who can’t be cared for at home a place to die.

But Roanoke lacks one. 44

A family full of doctors still faced hard decisions when it came to their own parents. 50

No one dies alone in a

Carilion project that aims to give dignity to patient’s final moments. 58

A Va. Tech professor

said hospice caregivers eased his burdens so much he lived an extra year. 62

Carilion Clinic Staff Vice President, Marketing and Communications

Editor, Content Writer Contributing Writers

Shawn Garrett

Manager, Content Development and Social Media

Copy Editor

Reporter

Marketing & Communications Consultant

Lawrence McConnell Publication Designer

Erica Myatt

4

Photographers

Final Wishes

Stephanie Klein-Davis Heather Rousseau Erica Yoon Matt Gentry

Editor

in partnership with

Putting Your Affairs In Order

How to make your final days, weeks or months meaningful.

32

Roanoke Times Staff

Making Your Care Plan

five stories

A Gift of Decisions on End of Life

Luanne Rife

Michael L. Dame

Marianne Wilder Kristin Goddard

Maureen Robb

Hannah Curtis Karen McNew McGuire Stephanie Specht

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advice for

Everyone

Death over

Dinner W O N D E R I N G H O W T O TA L K A B O U T E N D O F L I F E I S S U E S ? S TA R T W I T H A G O O D M E A L .

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A Gift of Decisions on End of Life

One of the ways to start an end-of-life conversation is to have a “Death Over Dinner” party.

Death over Dinner is an organization that works to normalize the way we talk about death and bring comfort and peace into the process of dying.

Its interactive dinner model offers hosts the opportunity to bring together guests — family members, friends or colleagues — at a dinner party about death and dying.

Although this may sound morbid to some, Death Over Dinner wants to turn one of the most difficult conversations into one of the most liberating.

Talking about death and end-of-life decisions involves more than just funeral arrangements. The conversation should also include personal questions about you or your loved one’s life and beliefs, as well as the participants’ wishes for how to die.

How do you hold a Death Over Dinner?

When you invite people, ask them to do some homework first.

Ask them to read “A Call for Physicians to Agree: Death Is Not the Enemy.” In this book, a doctor discusses the needs of dying patients.

Suggest they watch “Let’s Talk About Dying,” a TED talk by Dr. Peter Saul, in which he coaches us to think about how we want to die.

Your guests can also listen to “A Nurse Reflects on the Privilege of Caring for Dying

Patients,” a podcast from NPR. After guests arrive, start the dinner by having everyone at the table introduce themselves by talking about an ancestor they greatly admired. After a few words about why the person was special, let everyone “raise a glass” or light a candle in their honor.

Discussion Topics ‘ How would loved ones like to be cared for in the last phase of their life?

In the last 30 days?

On the last day? ‘ Who would they like to be with them when they die? ‘ How do they feel as death approaches?

End every dinner by asking everyone to describe what they admire about the person to their left and then spend time relaxing in the living room or outside gazing at the stars.

Give guests time to absorb the connections they have made.

Death over dinner? The conversation doesn’t have to be scary or uncomfortable.

Surround yourself with good food and company and talk openly about your or your loved one’s wishes.

— Carilion Clinic

7

Not everyone understands what hospice is about. First, hospice is not about giving up on a patient.

It is about making the most of the days a person has left.

Hospice caregivers offer support and comfort and help improve a patient’s quality of life. Often this lengthens their life as well.

What Is Hospice? hospice is a specific type of care for patients at the end of life. However, the focus is not really on the dying process — it’s about giving the patient and their family the best quality of life, patient comfort and family support.

This is achieved through expert pain and symptom management, caregiver education and emotional and spiritual support for the patient and family.

Hospice is not an individual care provider.

It is a team of individuals who work together to develop the best plan of care based on a patient’s wishes.

Hospice is composed of a team of social workers, chaplains, case managers, nurses and doctors. They all work together to make sure the patient’s needs are met, as well as the needs of the caregivers.

Continued on Page 10

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A Gift of Decisions on End of Life

Hospice Services Hospice offers many types of help, including: ‘ Skilled nursing care ‘ Certified nursing assistants ‘ Social workers ‘ Bereavement counselors ‘ Non-denominational chaplains ‘ Board-certified music therapy ‘ Pet and massage therapy ‘ A medical director and nurse practitioner ‘ Grief support groups for all ages and many types of loss

advice for

Everyone

IT ’S NOT ABOUT G I V I N G U P, I T ’ S ABOUT MAKING THE MOST OF THE TIME YOU H AV E L E F T

Hospice

101 9

When Is It Time for Hospice? the right time to consider hospice is different for everybody, but typically it’s when the patient has a disease in an advanced stage or a terminal diagnosis.

Typically, hospice may be right when you need to focus on symptoms, on comfort, on your family or on your faith. It’s also a resource to help you spend time with those you love in a comforting environment.

Once you do enter hospice, you are usually forgoing any more aggressive treatment. Hospice is about symptom management and pain control. Hospice focuses on caring — not curing. The hospice team works with you — the patient and the family — to manage physical, emotional and spiritual needs.

But at any time, if a patient’s condition improves, they may be “graduated” from hospice and choose curative treatment. The decision is completely up to the patient and family, with a strong emphasis on coordinating care and treatment with their provider.

What Does Hospice Provide? living with a life-limiting illness can make you feel as though you’ve lost control over your health and well-being. With a personalized care plan, hospice can help manage your symptoms and control pain to create a better quality of life in your final days.

Hospice volunteers are sometimes available to sit with a patient or provide caregiving breaks to the family. Some volunteers may also choose to be a part of a choir that visits patients with song or participate in services to honor patients.

“Hospice is about living and making the most of every day,” said Sharon Parker, R.N., manager of Carilion Roanoke Hospice. “Hospice patients sometimes experience isolation as they deal with their progressing disease. Hospice provides a network of support through multi-disciplines as well as volunteers.”

How Do I Select a Hospice Provider? we all want what’s best for our family members and

loved ones.

It’s important for patients and family members to consider the quality of care available. Hospice providers vary in their structure, size, philosophies and approach to care.

Consider how long a hospice provider has been in

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A Gift of Decisions on End of Life

your region. The longer-term hospice organizations clearly demonstrate a commitment to providing care to the community.

Talk to different hospice providers to determine what their philosophy of care plan or care team is.

At hospice, the number one priority is to know what the patient’s wishes are and to honor them.

All team members work collaboratively with hospice physicians to make certain a patient’s wishes are honored.

Does Insurance Cover Hospice? hospice is covered by the Medicare Hospice Benefit,

Medicaid Hospice Benefit and most private insurers.

Private insurance coverage varies but generally includes at least some hospice coverage. Contact your insurance provider to verify your level of coverage for these services.

If someone does not have coverage through Medicare, Medicaid or private insurance, hospice will work with the person and their family to ensure services can be provided.

Some people think hospice is a service for when there is nothing more to do. That is wrong. There is much that hospice staff can do, given time.

All too often, patients say they wish they had been referred sooner, so it’s important to explore hospice services early on.

If patients are referred to hospice just days or hours before death, they are often unable to fully express their end-of-life wishes. With early referrals, pain and symptoms can be addressed in a more timely way.

Once the patient is more comfortable, staff can explore the patient’s goals and wishes to determine how they would like to live each day to the fullest.

Or to begin to understand what it would take for the patient to have a peaceful death.

Advance directive discussions can occur, and hospitalizations are potentially avoided. When pain and symptoms are managed, patients can concentrate on memory-making activities, have talks with family members and express thoughts or feelings that would otherwise go unsaid.

Hospice truly provides a holistic approach to living life. One patient recently said that hospice had become his family — he just wished he had found them sooner.

— Carilion Clinic

At hospice, the number one priority is to know what the patient’s wishes are and to honor them.

All team members work with hospice physicians to make certain a patient’s wishes are honored.

Fact Fallacy vs.

COMMON MISCONCEPTIONS ABOUT HOSPICE CARE Fallacy: Hospice care is for the last weeks of your life.

Fallacy: Hospice doesn’t let you keep your own doctor.

Fallacy: Only cancer patients get hospice care.

Fact: Hospice can start much sooner — when you receive a prognosis of up to six months to live. And if you live longer than six months, you can continue to receive hospice care.

Fact: Your doctor can still be your primary care physician if you receive hospice care.

Fact: Hospice is for anyone with a serious, complex and potentially life-limiting illness.

Fallacy: Hospice care is delivered only by volunteers.

Fallacy: You must leave home to enter hospice.

Fallacy: Hospice care is too expensive for most people.

Fact: Medical professionals provide hospice care, supplemented by licensed social workers, volunteers and chaplains.

Fact: Most hospice patients are cared for in their home.

Fact: Hospice is covered

by Medicare, Medicaid and most private insurers.

— Carilion Clinic

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11

It is important to share special moments with our loved ones whenever we can; this often means caring for them when they are seriously ill.

According to the National Alliance for Caregiving and AARP, approximately 43.5 million caregivers have provided unpaid care to an adult or child in the last 12 months.

The majority of those are providing care to an adult age 50 or older.

“It’s normal to feel overwhelmed or unequipped as a caregiver,” said Sarah Stevens, a clinical social worker with Carilion Clinic Hospice. “You’ll most likely need help and support on your journey.”

Maybe you need support in your ability to make health decisions and honor the wishes of your loved one, or maybe you’re not yet comfortable using medical equipment or taking care of your loved one’s basic needs like bathing. The needs and reasons for support can be endless and varied, but there is help to be found.

Stevens listed her top five tips for caregivers who might be struggling and looking for education and support:

1. Attend Classes if anyone in your area holds training classes for caregivers. Carilion Clinic offers a free one-hour class, Caregiver Training 101. Each attendee receives hands-on practice with medical equipment and access to instructors who provide tips they’ve learned over the years to make caregiving easier. To enroll, call 540-266-6000 or 800-964-9300. check to see

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A Gift of Decisions on End of Life

2. Know Your Insurance medicare , medicaid and

private-pay insurances often cover services that caregivers are unaware of. Most insurance plans pay for home care, including hospice. Those who qualify can also receive community caregivers paid for by Medicaid.

3. Plan For Medical Care someone would want in case they cannot make the decision for themselves is important information all caregivers need to have. Talk with loved ones about medical preferences, and put those wishes in writing through a medical power of attorney, power of attorney, Physician’s Order for Scope of Treatment or an advance directive.

the medical care

4. Know And Use Your Community Resources your community is a support. Look for pro-

grams that can help, such as the Agency on Aging, which can provide home-delivered meals, volunteers and education.

5. Breathe And Take Time For Yourself only if you also care for yourself! Take time to practice self-care. A short walk, a private moment alone or a quick lunch with a friend can really help. Taking time for yourself will help you avoid caregiver fatigue and burnout. If you feel like you are already burned out or are showing signs of fatigue, reach out to family or friends. Ask for help.

It is important for both you and your loved one to get the care and support you need. For more information about caregiving, visit the National Alliance for Caregiving and AARP. For additional support in advance care planning, visit the National Institute on Aging.

you can give good care

— Carilion Clinic

advice for

Caregivers

Giving Care TA K I N G O V E R MEANS MAKING TIME — FOR Y O U R LO V E D ONE AND YOURSELF

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advice for

Caregivers

Long

Distance Care

C O M M U N I C AT I O N A N D C O O R D I N AT I O N ARE KEY WHEN YOU L I V E FA R AW AY F R O M A LO V E D O N E

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A Gift of Decisions on End of Life

If you are struggling to care for an aging parent or other loved one who lives far away from you, you might feel quite alone.

In fact, nearly 7 million Americans are trying to do the same thing.

The vast majority of people over age 65 live with at least one chronic health condition.

Ensuring that an elderly loved one has the care and support they need when you can’t be with them every day is complicated, but with teamwork, coordination and a willingness to ask for help, it can be done.

The National Institute on Aging describes

a long-distance caregiver as anyone who lives an hour or more away from the person they are helping. A long-distance caregiver may: ‘ Help manage finances and bills ‘ Arrange for in-home care in the form of home health aides and durable medical equipment ‘ Evaluate skilled nursing facilities ‘ Provide emotional support and respite care for primary caregivers ‘ Research health problems or medicines, advocate for your loved one or manage insurance benefits and claims ‘ Keep family and friends updated and informed ‘ Create a plan and organize paperwork to be used in an emergency Dr. Brian Unwin, chief of Geriatrics and Palliative Medicine at Carilion Clinic, recommends taking advantage of in-person visits to evaluate three aspects of your loved one’s life: their physical safety at home, their physical and emotional health and their financial situation.

Your loved one might resist interventions, so be sure to include them in any planning and acknowledge their contributions as you work together to help them remain independent as long as possible. To that end, the American Geriatrics Society encourages caregivers to enlist their loved ones in monitoring their own mobility and safety, and reporting any changes in daily activities such as: ‘ Using the toilet ‘ Bathing or dressing ‘ Getting in and out of bed or a chair ‘ Managing finances and paperwork ‘ Walking or driving ‘ Using the phone ‘ Managing medicines ‘ Grocery shopping or cooking Caring from afar means relinquishing control and relying on others to be your eyes, ears and hands. Carilion Clinic Home Care recommends forming a team to support your efforts to care for your loved one.

Your care team should include medi-

cal professionals, friends, family members, community resources and, of course, your loved one. Ask what each team member is willing and able to do, from mowing the lawn to working a puzzle together to driving to doctor’s appointments.

The Home Care team recognizes that while it is natural to feel guilty about delegating certain jobs, one person simply cannot do it all.

Even if your loved one is healthy, becoming a caregiver is a stressful responsibility that many people feel unequipped for. Fortunately, training is available at low or no cost in most communities.

In addition, support groups that focus on general caregiving or on a chronic illness your loved one lives with can be immensely helpful in fostering a sense of community and eliminating the loneliness that many caregivers feel. The Family Caregiver Alliance is a great place to start when looking for caregiver support.

And finally, remember to take care of yourself. Whether it’s quiet meditation, a workout or time with friends, self-care can boost your mental and physical well-being.

Free Caregiver Training It’s important to be with loved ones in special moments when we can. This often means interacting with or caring for them even when they are seriously ill.

To help caregivers in our community, Carilion Clinic Hospice offers the Caregiver Training 101 program. In a series of free classes taught by our hospice team, caregivers will learn information including: ‘ Taking care of their loved one in a home setting ‘ Understanding physical care and safety for both caregiver and patient ‘ How to give medications properly ‘ Training on medical equipment (oxygen tank, wheelchair, hospital bed, etc.)

— Carilion Clinic

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advice for

Caregivers

HOW TO KEEP YOUR WORDS ENCOURAGING IN THE MOST D I F F U C U LT T I M E

Death is hard to cope with.

It’s also hard to discuss.

If you know someone with a terminal illness, it can be hard to know what to say. Often, people say nothing at all. But ultimately, saying something or making a loving gesture can mean everything to that person during their final moments.

Use the following tips to help someone you love cope with death.

— Carilion Clinic

What

NOT To Say

D O N ’ T S AY:

Everything happens for a reason.”

‘ This could make a person feel like their illness is their own fault.

I N S T E A D S AY:

I don’t know why this is happening to you, but I’m here to support you through it all.” ‘ Letting your loved one know you are not going anywhere during a difficult time can be very comforting. Even if you can’t name the reason for their illness, they’ll know they are not facing it alone.

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A Gift of Decisions on End of Life

D O N ’ T S AY:

“Have you made any

Caring for someone with Alzheimer’s isn’t easy.

Reaching us is.

arrangements?” ‘ It’s important to have tough conversations with your loved ones before end-of-life care is needed. But if you haven’t had those conversations, bringing it up in the right way will lead to a more meaningful discussion.

I N S T E A D S AY:

I love you and I want you to know that if we find ourselves in a position where I need to make decisions on your behalf, I want to make the decisions you’d want me to make. Help me understand what’s important to you.” ‘ If the person is not willing to discuss advance care planning the first time you bring it up, don’t be afraid to try again at another time.

D O N ’ T S AY:

“I don’t really

want to discuss your illness.” ‘ Being a good listener can be essential to helping your loved one cope. They may want to openly discuss their illness. If so, take their lead. Allow them to talk and don’t judge.

Giving the gift of your presence can be the greatest gift you can give.

I N S T E A D S AY:

“I’m here to listen to you.

Let me know anytime you want to discuss your illness.” ‘ Being present with a loved one or friend who is terminally ill does make a difference even if you don’t feel like it is. Being with someone in their final moments will help them cope — and can provide valuable life lessons to you in the future.

If you care for someone with Alzheimer’s disease, memory loss or dementia, you are not alone. We’re here day or night - whenever you need us - offering reliable information and support.

Free 24/7 Helpline: 800.272.3900 Alzheimer’s & Dementia Caregiver Center: alz.org/care

What Not To Say

17

How To Talk To

Children K I D S W I L L F I G U R E I T O U T, S O B E H O N E S T F R O M T H E S TA R T The death of a parent or loved one can be just as hard on a child as it is on an adult.

But children process death and deal with grief very differently than adults. According to Frannie Gaeta, L.S.C.W., a Carilion Clinic bereavement specialist and head of Carilion’s Soul Survivors family grief support program, the signs of grief in a child can vary by age.

Young children might regress and begin wetting the bed or have nightmares, while older children may have trouble in school, exhibit sleeping or eating issues, or no longer find enjoyment from activities they once loved.

Gaeta said that some children will often mask their grief completely and give parents the impression that they are doing fine. “A parent will think that if the child is still getting up for school and eating dinner, then he must be OK,” she said. “They don’t realize the child is actually struggling.”

You can help your child get through the emotional pain that grief can cause. Gaeta said communication and finding the right kind of support are the keys to helping your child process and manage grief in a healthy way.

1. Be Open And Honest to be open and honest about the death. Have an age-appropriate conversation about what happened to the loved one who died.

For young children, you might need to explain how a body stops working, but you might also need to explain that the person who died is not coming back. For older children, honesty is especially impor-

tant even if the circumstances of death include murder or suicide.

“Eventually children will find out how that loved one died, and if you are not honest with them from the beginning they may feel that they can never trust you again,” Gaeta said.

2. Discuss Changing Family Roles the death of a parent or sibling can change the family dynamic, so there are bound to be questions about who will take on certain roles and how the roles of each family member will change. Concerns from your children can range from who will be the breadwinner in the family to something simple like who will walk the dogs.

“Everyone in the family has a role to play, and sometimes older kids will automatically try to put themselves in that role, so it is important for the family as a unit to talk about who is going to fill certain roles and responsibilities around the house,” Gaeta said. “Have that conversation and reassure your child that now that dad is gone, mom is going to do this and let them know that things will eventually be OK.”

3. Be A Role Model will show your child how to grieve, and children often do as well as the parent is doing.

“If the parent is taking care of him or herself and doing as well as they can while dealing with grief, then so will the child,” Gaeta said. “If the parent is struggling, you will see that reflected in the child.”

Children learn from the actions of their parents; therefore, if the parent is not demonstrating a healthy way to grieve, the child may mirror them. Often parents will seek support and education on how to help their child through his grief and are concerned that he is not showing emotions.

“I ask them if they cry in front of their child and if the answer is never, there’s your answer,” Gaeta said.

how you deal with grief

the first step is

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A Gift of Decisions on End of Life

Caregivers

4. Talk About It talking to your children and encouraging them to

ask questions is essential in helping everyone deal with loss. “If your child won’t talk to you about it, but you have noticed changes in him or he seems

Eventually children will find out how that loved one died, and if you are not honest with them from the beginning they may feel that they can never trust you again.”

FRANNIE G A E TA CARILION CLINIC BEREAVEMENT SPECIALIST

depressed, it may be time to find a therapist or a support group,” Gaeta said.

Youth Support Group

5. Seek Professional Help the grieving process is extremely important, but sometimes it is not enough. Gaeta recommended seeking a grief support group or turning to a therapist if your child has more individualized needs.

“Support groups can often seem less intimidating for children and it can be very therapeutic because they can talk to other kids who are going through the same thing and are having similar thoughts and feelings,” Gaeta said. “They don’t feel like they are alone in how they are feeling.”

As you and your family work through grief, just remember that with children and teens, emotional and physical signs often indicate their feelings more than words. Keep an eye out for those subtle signs and changes just as much as the obvious ones. family support throughout

Soul Survivors is a bereavement support group for youth and their caregivers, guardians or parents.

The program provides a caring, safe environment where participants are free to explore their feelings and concerns. Participants will learn that grief is not a process of forgetting, but remembering with less pain. Soul Survivors provides an opportunity for participants to meet others their age who know what it’s like to have experienced the death of someone they love. Participants will: ‘ Relate memories, explore feelings and remember loved ones through creative activities ‘ Focus on the needs of mourning with activities such as coloring books for younger participants and private journals for older ones ‘ Eat a light meal with other participating families Register or refer a child in need by calling 800-422-8482.

— Carilion Clinic

It is our mission to build a bridge of trust, compassion, respect and a lasting relationship with our families during the most difficult of times.

540-389-5441 • www.johnmoakey.com • 305 Roanoke Blvd, Salem Talking To Children

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advice for

Planners

Make A

Care

Plan

ADVANCE PL ANNING CAN ENSURE YOUR WISHES ARE HONORED WHEN THE TIME COMES

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A Gift of Decisions on End of Life

It isn’t anything we like to think about, but preparing for the future can make all the difference if you have a health crisis or become incapacitated.

Would you want all of the heroics that modern medicine can provide — or is comfort and quality of life more important?

In an emergency, if your wishes aren’t known, you might not have a choice.

According to a recent study, only about a third of U.S. adults have documented their wishes, and those with chronic illnesses were only slightly more likely than healthy individuals to put their wishes down on paper.

It may not be something you want to think about, but planning for health care you may receive in your final months or weeks — known as end-of-life care — is crucial for you and your family, even if you are healthy.

The process does not have to be daunting or complicated.

Lisa T. Sprinkel, M.S.N., R.N., senior director of Carilion Clinic Home Care and Hospice, broke it down into five steps.

1. What Do You Want Your End-Of-Life Care To Be? for example ,

do you want to be cared for at home with family and caregivers? Or would you rather be in another setting such as a long-term care facility?

A study recently found that 90 percent of patients dealing with a life-limiting illness prefer to receive their end-of-life care at home. Yet only one-third actually did.

Continued on Page 22

21

2. What Do You Want Your Medical Care To Look Like?

5. Complete Your End-Of-Life Documents

let your values drive your decision making.

available for end-oflife planning, but Sprinkel notes that two important documents to include are an advance directive and a medical power of attorney.

If your heart stopped, would you want to be resuscitated? Would you want a feeding tube for artificial nutrition? Do you want to donate your organs?

3.Who Do You Want To Make Medical Decisions For You? or a friend.

Just make sure this person is a mentally competent adult whom you trust and who would assertively make sure that your wishes are fulfilled.

this person could be a family member

4. Make Sure This Person Knows this might not be an easy conversation to have, but

you want to be sure that this person will follow your wishes, even if they don’t agree with your choices.

It is also important to make sure that they are willing to accept this responsibility.

there are several documents

‘ Advance Directive An advance directive, or what is sometimes referred to as a living will, is a legal document that allows you to make your health care choices clear even if you are unable to communicate them to your doctor.

Advance directives address health concerns as well as decisions regarding visitation, disclosure of medical records and other instructions specific to each individual.

This is also a way to let your family, friends and health care provider know your wishes regarding care well ahead of time to avoid confusion later on.

Your provider can also translate your end-of-life wishes into a Provider Order for Scope of Treatment

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A Gift of Decisions on End of Life

form that becomes your medical orders for treatment. ‘ Medical Power Of Attorney A medical power of attorney is a legal document that authorizes someone you trust (see Steps 3 and 4), often called an agent or surrogate, to make medical decisions on your behalf.

The agent will be given this authority only if it is determined by your doctor that you are incapable of making decisions on your own or you are unable to communicate your wishes.

Once you have these documents finalized, make sure to give a copy of each to your physician and to trusted family and friends.

To get an advance directive form, contact your doctor or visit the Virginia State Bar’s Healthcare Decisions Day site, vsb.org/site/public/healthcaredecisions-day.

If you are unsure about the kind of end-of-life care you want to receive, talk to your doctor today.

— Carilion Clinic

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advice for

Planners

Putting Your

Affairs In Order

WILLS, TRUSTS AND P O W E R S O F AT T O R N E Y WILL ENSURE YOUR ASSETS ARE HANDLED HOW YOU WANT

24

A Gift of Decisions on End of Life

Getting your affairs in order might not be something you want to think about.

Or, you might dismiss planning by saying, “I don’t have that much.” Another misconception is that it is too expensive or complicated.

For almost everyone, however, a plan is needed and should include a will, a power of attorney and an advance medical directive. Some plans will also include some sort of trust.

Here is an overview of wills, power of attorney, trusts and things to consider when choosing an attorney to partner with on end-of-life planning.

Wills a will states how you want your money and belong-

ings to be distributed to family, friends and organizations after you die.

While your will directs who will inherit your prop-

erty, it doesn’t govern property passing to a joint owner or to a designated beneficiary. Property owned jointly with survivorship does not pass through the will; it passes to the joint owner.

“For instance, life insurance proceeds pass to the beneficiary you designate on a company form,” said Mark Dellinger, attorney with Rhodes, Butler & Dellinger. “The will does not control those proceeds unless the owner fails to designate a beneficiary, and the company default is the estate.”

A will also allows you to choose a guardian for minor children.

“A contentious guardianship battle between grandparents can be avoided through this simple provision in the will,” Dellinger said.

By making a will, you can choose who will be the executor of your estate — the person legally responsible for handling the administration of your will after your death. Making this designation helps avoid associated costs, like the requirement of surety on a bond or an appraisal.

A will allows you to focus on the specifics of an overall plan for children or grandchildren who rely

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or will rely on public benefits, such as Medicaid and Supplemental Security Income; sometimes this results in choosing not to benefit these individuals through the will. Since these beneficiaries often lose their public benefits when they receive an inheritance, Dellinger said, parents or grandparents can prevent the loss of benefits by designating specific assets to a special needs trust.

A will also gives you an opportunity to benefit others, such as charities.

erned by the will. Using a power of attorney to write checks is often a better alternative.

Dellinger sees many of these documents, and he said the majority of them have not been tailored to specific people or situations.

“Too many people, both professionals and the general public, think a form they easily obtain will be adequate,” he said.

Trusts that specifies how someone (the trustee) is to manage and use money or other property for one or more beneficiaries. Trusts serve many different purposes.

There is no one-size-fits-all trust.

If your child dies before you, would you want your grandchildren to get all of their inheritance at age 18 or 21? If not, then a grandchildren’s trust might be important to you.

“A trust allows you to dictate when the inheritance is made available to the beneficiary,” Dellinger said.

“For instance, amounts of the principal could be

a trust is a document

Durable Power of Attorney For Finance a durable power of attorney for finance lets someone you designate access your finances to pay your bills. If you set one up, make sure it’s someone you trust because that person will have access to your checking account, property and investments.

Sometimes issues come up because a parent added one child to a bank account instead of using a power of attorney. That child is a joint owner of the account, which means that the account is not gov-

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A Gift of Decisions on End of Life

distributed to a beneficiary in certain percentages at certain ages, such as one-third at 25, one-third at 30 and one-third at 35.”

A special needs trust holds money for a disabled child or grandchild to pay for items that their public benefits do not cover.

This allows them to enjoy a high quality and dignity of life. The child can still receive their public benefits but also have a separate source to pay for things that Medicaid and SSI would not cover, such as a camera, a microwave, a refrigerator, haircuts and certain dental procedures. These items are only a few of the beneficial items that could be provided by a special needs trust.

Trusts are also important for those who want to avoid estate taxes, handle special circumstances of second marriages, avoid disruption of a family business or avoid probate taxes.

Finding The Right Attorney For You navigating the legalities

No one looks forward to estate planning.

We can help.

wills and trusts can seem daunting, and an attorney can help to identify and articulate your needs.

Start by looking for local attorneys who specialize in elder law or estate planning. Be sure to ask about their qualifications and experience.

When meeting for a consultation, Caregiver.org suggests you bring the following with you: ‘ List of major assets (real estate, stocks, cash, jewelry, insurance, investments) ‘ Documents of title (copies of deeds, stock certificates, loan papers) ‘ Contracts or other legally binding documents ‘ Lists of all major debts ‘ Wills or durable powers of attorney for health care or finance ‘ Bank statements, passbooks, CDs Planning ahead protects you from decisions that you don’t want and guides your loved ones. After completing all the legal paperwork, be sure to talk with your family about your decisions.

— Carilion Clinic

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Putting Your Affairs In Order

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Planning and decision-making for end-of-life care takes a lot of time and energy to complete.

But when we prepare in advance, we can relieve the decision-making burden from those we love and help create the opportunity for peace at the end of life.

Communication Is Key “first, talk to your family and friends honestly about your condition,” said Lisa T. Sprinkel, M.S.N., R.N., senior director of Carilion Clinic's Home Care and Hospice. “It can help you achieve peace of mind and help your loved ones understand your goals of care so they can be incorporated in your medical treatment plan. Your family also needs to know who you’d like to make medical decisions if you become incapacitated. That person needs to understand and agree to carry out your wishes.”

When you’ve chosen your proxy, provide them with your medical information so they are not later surprised at a critical time. Tell them exactly which medical interventions you would like and which you wouldn’t.

28

A Gift of Decisions on End of Life

advice for

Planners

Preparing For Your

Death MAKING A LIST OF I M P O R TA N T T H I N G S YOU WANT TO DO CAN HELP MAKE THE TIME MEANINGFUL

Make the Most of Your Time it ’ s important to decide

how you want to live the final part of your life.

Create a bucket list if you don’t have one and identify what you’d like to accomplish. Think about where and when you’ve been happiest. What makes your life worth living?

Ask yourself these questions: ‘ What would you say if a nurse asked if you were a spiritual person? ‘ What three non-medical facts do you want your doctor to know about you? ‘ If someone wanted to make a donation in your memory, where should it go and why? ‘ If only one story is told at your memorial service, what should it be and who should tell it? ‘ Who should sing at your service and what should they sing? ‘ Who have you not talked to in more than six months that you want to see before you die?

If you’ve had any rifts with family and friends, it may also give you peace of mind to resolve them.

Think about saying “I’m sorry,” “I forgive you,” or “I love you.”

Taking these steps can also help you: ‘ Decide who you’d like to have your special personal belongings ‘ Make arrangements for the care of your pets ‘ Ask your doctor about symptom control and comfort-care options ‘ Consider whether you will need long-term care or a disability policy ‘ Update your will and estate plan, if you have one ‘ Execute a financial power of attorney ‘ Consider completing a living will and an advance directive ‘ If you are a single parent, establish a guardianship for your children Even if you’re healthy now, planning for end-oflife care can help assure you that your wishes will be carried out. And don’t forget to identify your legacy — those lessons that you most want to pass on to family and friends.

— Carilion Clinic

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Preparing For Your Death

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Did you know that your physician is a great resource for planning your end-of-life care?

Dr. Ralph Caldroney, a Carilion Clinic internal medicine physician, encourages all of his patients to be proactive, and not reactive, when it comes to decisions about future health care.

“In the absence of a living will or other advance care directive, medical care providers are going to provide any and all levels of care that they deem appropriate,” he said.

“And family members want loved ones to live forever, so if they are not aware of your wishes, their decisions are often from the heart and not the head.”

Taking that responsibility out of your family’s hands and putting it down on paper is the best way to ensure that you get the kind of care you want.

Once certain medical steps are taken in a crisis, it can be hard to undo them, and needless pain and emotional distress for all concerned often follows.

When determining your wishes, think about what is most important to you: ‘ Is it independence, comfort or longevity? ‘ What kind of treatment would you want to undergo to extend your life? ‘ Would you want treatment only if a cure is possible?

“Only you can define when quantity has overstepped quality, so make it easy for your family and make your wishes for care very specific,” Caldroney said.

He also suggested involving your primary care provider or whoever you feel is your managing provider/physician.

Your doctor can help you create a plan for care and answer your questions about different kinds of treatment, such as resuscitation, mechanical ventilation, tube feeding, dialysis, palliative care (comfort care), hospice care and organ and tissue donations.

When working with your doctor, Cal-

30

A Gift of Decisions on End of Life

droney suggested keeping the following in mind: ‘ Set up a separate appointment with your physician to discuss your medical wishes. Don’t try to have this discussion at the tail end of a regular visit. You will need to discuss the details, so schedule at least 30 minutes to an hour. ‘ Schedule the appointment at the end of the day, so your provider won’t be rushed to get to the next patient. ‘ Bring your spouse/primary caregiver or the person who is your designated power of attorney with you. But don’t worry about including other family members. If too many people are involved, it can be hard to get into the details of the discussion. ‘ Bring as many written documents as possible that relate to your wishes for care.

There are several templates or preprinted forms that you can use as a guide, such as those available through the Virginia Department of Health. ‘ Be as specific as possible about what you want to be done and not done.

Once you have completed your advance care directive, give a hard or digital copy to the appropriate family members or caregivers. Make sure they understand and are aware of your wishes and the medical treatment you want. It is also a good idea to give a copy to your physician.

In today’s digital age, you can easily store your advance directive electronically so it is available for any and all health care settings within this country. Save it on your phone or tablet and set up a registry on the Virginia Department of Health’s registry page at connectvirginia.org/adr/.

Take steps now to ensure that you receive the care you want in the future. When you and your loved ones are in crisis mode, it is hard for everyone to make rational decisions.

If you have questions about what to include in your advance care directive, ask your family physician. To find a provider near you, visit CarilionClinic.org/providers.

— Carilion Clinic

advice for

Planners

A PROAC TIVE APPROACH TO CARE CAN EASE THE PA I N O F T O U G H C H O I C E S F O R Y O U A N D Y O U R FA M I LY

Make A

Medical Plan 31

advice for

Planners

Planning Your

Funeral MAKING ARRANGEMENTS AHEAD OF TIME C A N E A S E Y O U R LO V E D O N E S ’ S T R E S S

It’s a story that’s repeated every day.

A loved one dies and family members struggle to plan a celebration of their life. Inevitably, questions arise about what the deceased would have liked.

Planning your own funeral or celebration may seem unpleasant or possibly self-serving. Yet death is a fact of life. Unlike for so many other predictable events, few people plan their funeral or final arrangements.

“Ultimately, planning your own end-of-life arrangements allows your family and friends to grieve without making big decisions in a short span of time,” said Sammy Oakey III, president of Oakey’s Funeral Service and Crematory. “In my experience, people who have made advance arrangements limit their loved ones’ stress in an already stressful time.”

Oakey suggested asking yourself these questions when planning your own end-of-life arrangements: ‘ What type of service, ceremony or gathering

32

A Gift of Decisions on End of Life

might you want (if any at all)? ‘ Would you prefer to be buried or cremated?

Are there special traditions you want to incorporate? ‘ Where would you want your final resting place to be? What type of marker would you like? ‘ If you will be buried, what type of casket would you want? If you will be cremated, what type of urn would you prefer?

Whatever you do, Oakey said, “Make sure you put your wishes in writing and let your loved ones know about your plan and where to find it.”

By crafting your own arrangements, you help people remember you the way you want to be remembered while letting them focus more on celebrating your life and less on logistics.

In addition to easing your loved ones’ pain at the time of your death, there are financial benefits to planning ahead. Professional planning assistance is available through your local funeral service providers.

— Carilion Clinic

Ultimately, planning your own end-of-life arrangements allows your family and friends to grieve without making big decisions in a short span of time.”

SAMMY OAKEY III OAKEY’S FUNERAL SERVICE PRESIDENT

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Let’s Make This Good H ospice workers feel A SPECIAL CALLING TO HELP PEOPLE MAKE THE MOST OF THEIR REMANING TIME LUANNE RIFE The Roanoke Times By

Photo STEPHANIE KLEIN-DAVIS, THE ROANOKE TIMES

Lee Graves received hospice care at his Roanoke home on Orange Avenue.

From Final Wishes: A Series on Navigating Life’s Last Journey Reprinted from The Roanoke Times with the permission of the publisher. Š 2017 The Roanoke Times

35

For years, Shirley Ballentine had confidently nursed hospital patients before wading into hospice care.

She was still testing the depths of her commitment, wondering if she was in over her head, when the phone rang. One of her first patients, a man with colorectal cancer, was nearing death when a tumor ruptured. He was bleeding and in horrible pain. Ballentine ordered more powerful medication but it had not arrived before she got to his home. He thought if he could just reach his recliner, he would find some relief.

Ballentine and the man’s wife struggled to help him cross the room. They didn’t quite make it and collapsed on the living room floor. Ballentine, a former labor room nurse, took a deep breath and drew upon years of coaching moms to bring life into the world.

Breathe, she said.

He turned to me and said, ‘Is my vision supposed to change? It’s blurry and fuzzy, but the colors are spectacular.’

And I said, ‘Yeah, that sounds right. Breathe some more.’

He turned to his wife and said, ‘This is happening, and I want to thank you for being there with me.’

He started looking up to his left. I said, ‘Are you seeing something?’

He said, ‘I don’t know, but I think I’m supposed to go there.’

And I said, ‘Can you describe it for me?’

And he said, ‘It’s too beautiful for words.’

I said, ‘That sounds like a good place to head toward. We love you. You did a good job. It’s OK to go.’

He turned to his wife and said, ‘I’ve got to go now. I love you.’ And she said, ‘I love you, too.’

He took his last breath. She turned to me, and said, ‘That’s it? That was beyond anything I could ever imagine.’

That was a turning point for me. Everything I learned in nursing brought me to utilize those techniques. Even if I don’t know what to do, I know what to do.

Shirley Ballentine said she and her team at Carilion Hospice are there to make sure people’s lives are as fullfilling and complete as possible.

The Person, Not The Disease that experience was many years ago in North Caro-

lina. Ballentine has since moved to Roanoke and heads up a team at Carilion Clinic Hospice. She said she feels blessed to coach people with terminal illnesses as they prepare to leave the world.

First, though, they have living to do.

When people enter hospice, they often think they are giving up and hastening death.

“I’ve had some people say, ‘Oh, you’re here to kill me,’ and that breaks my heart,” she said. Ballentine explains that she’s there to make their lives as fulfilling and complete as possible.

“They’ll say, ‘I’m not ready.’ And I say, ‘Good to hear. I’m here to help you live with what’s dancing in your body right now,’” she said. “‘We don’t know if it’s going to be a long dance or a short dance. I’m voting for the long dance, and we have a lot of dance partners here for you. So let’s make this good.’”

With hospice, patients cease medical interventions such as radiation and chemotherapy and begin comfort care. Patients still have nurses and doctors, and they get medical treatments for problems unrelated to the terminal illness, such as antivirals for the flu.

In the Roanoke and New River valleys, there are a number of businesses that offer hospice care in homes and institutions, and two nonprofits, Carilion and Good Samaritan.

Most insurance plans provide a hospice benefit and usually follow Medicare’s lead, as it pays for much of the hospice care in the U.S. To qualify for Medicare’s benefit, a patient must have a terminal illness that will lead to death within six months if

Did You Know? ‘ Most insurance plans provide a hospice benefit and usually follow Medicare’s lead, as it pays for much of the hospice care in the U.S. To qualify for Medicare’s benefit, a patient must have a terminal illness that will lead to death within six months if the disease progresses on its current course.

Photo HEATHER ROUSSEAU, THE ROANOKE TIMES

“Let’s Make This Good”

37

the disease progresses on its current course. Very few patients are on hospice that long. Most use it in their last days or weeks, and then their concerns center on pain control.

Hospice benefits cover a multitude of therapies such as massage, music and counseling. Social workers are available to help navigate legal arrangements.

Caregivers help with bathing. Volunteers offer respite so families can take a break, and they read to patients and help them write or record their stories.

“The biggest complaint we have is from families.

They say, ‘We just wish we had you sooner,’” said Sue Ranson, president and CEO of Roanoke-based Good Samaritan Hospice.

“To me, the question is why doesn’t everyone end up with hospice? It’s a six-month benefit [under Medicare],” Ranson said. “Why is our median length of stay 20 days? Why do a fourth of our patients live less than seven days? That’s tragic to me. There is so much we can do to help people focus at the end on what’s important to them.”

Long ago, one of Ranson’s patients told her that when hospice came into his life, his disease got smaller and life got bigger.

“When somebody has a terminal illness, they get on a moving sidewalk and get pulled into a system of treatments and labs and tests,” she said. “When we get involved, all that stops, and we are able to say, ‘Let’s not focus on the disease. Let’s focus on what matters to you.’”

A Hospice ‘Graduate’ for some patients ,

the care that hospice delivers changes the disease’s trajectory and their prognosis improves.

Ranson said she tells people, “You have a 15 percent chance of getting better and graduating, and you can fire us at any time.”

“I just want people when they come under our care to know that they still have choices,” she said.

Ballentine has twice graduated Lee Graves from hospice. He’s 102 — or as he puts it, 99 plus 3.

Graves is familiar to students of African-Americans’ contributions to Roanoke’s railroad history.

He grew up in West Virginia, spent one day in a coal mine and decided the job was not for him.

He moved to Roanoke and landed a job washing dishes on train food cars. Eventually, he rose to the

Sue Ranson, the former president and CEO of Good Samaritan Hospice, said the biggest complaint she gets from families is they just wish Good Sam had been in their loved ones’ life sooner. Ranson retired in 2018.

rank of chief cook and traveled with four railroad presidents, mostly serving them their favorite meal: steak. He has dementia but recalls some of the places he went and the celebrities he met.

In 1961, he bought a six-bedroom home on Orange Avenue where he and his wife raised their son and three daughters and had plenty of room for visiting relatives. He tended luscious flower gardens, loved music and left the cooking to his wife, much to the chagrin of his son, Lee Graves Jr., who, as an adult, discovered his father could make biscuits so delicious tears would spring to your eyes.

Today, his three children who live in Roanoke take turns staying in his home and the fourth visits often from Charlotte, North Carolina. Graves spends much of his time in a second-floor bedroom, though he often makes his way down the steps. Hospice suggested changes to his medication and the stairway to lessen his risk of falling.

In December, Graves stopped eating, his weight plummeted and he became malnourished. Ballentine was called in and brought with her an array of services. Graves responded, began eating, gained weight and no longer qualified for hospice.

By spring, he again had stopped eating. Ballentine said the disease process for dementia can cause difficulty in swallowing and give rise to suspicions that food is tainted.

The hospice team again swung into action.

For Graves’ 102nd birthday on March 13, hospice brought in a choir.

Photo HEATHER ROUSSEAU, THE ROANOKE TIMES

“He was singing right along,” said his daughter Gayle Graves. The family took a video. “Afterward he went to the back door and looked out. Then he got on his bike and rode for a half hour after they left.”

Ballentine returned for a weekly visit. She pumped up an old-school blood pressure cuff and listened.

“I love your blood pressure: 124 over 64. You have the blood pressure of a teenager. Your body still thinks it’s a teenager, or at least parts of it does,” she told him.

Graves broke into a smile. His room was decorated with birthday cards and balloons and family photos. Ballentine listened to his tummy and quizzed him on what he ate for breakfast and lunch and then reminded him to bend and flex his knees and feet so his legs don’t get weak.

Teaching The Doctors “ we live in an area where culturally , death is uncomfortable for people to discuss,” said Lisa Sprinkel, director of Carilion Clinic Hospice. “There is not any background of what the end of life should look like, the type of care and where they would like to be.”

Carilion is working with primary care physicians to help them initiate and continue conversations with patients and families.

It’s the Chuck E. Cheese approach, as a physician explained at a seminar Ranson once attended. The doctor noticed that when she abruptly told her kids it was time to leave the pizza restaurant, they pleaded for five more minutes.

So she started warning them: They had 20 min-

They’ll say, ‘I’m not ready.’ And I say, ‘Good to hear. I’m here to help you live with what’s dancing in your body right now. We don’t know if it’s going to be a long dance or a short dance. I’m voting for the long dance, and we have a lot of dance partners here for you. So let’s make this good.’”

SHIRLEY BALLENTINE

CARILION CLINIC HOSPICE NURSE

While he went through a series of exercises, they chatted about the arrival of warm weather and his penchant for gardening.

The conversation meandered to his days on the railroad.

Later, Ballentine talked with Graves’ children.

“He’s starting to make us look silly again,” she said.

“We may have to graduate him again. He’s doing so well.”

“I always thought hospice came in when a person was on his way out. But seeing what you do that’s not necessarily true,” Graves Jr. said. “Every time someone says hospice, you’d think death was around the corner.”

A few weeks later, Graves no longer qualified for hospice. He still has home health services and physical therapy, but the music therapy he so loves is gone.

The family expects they’ll soon welcome back Ballentine.

utes, then 10 and 5. When it was time to depart, they were prepared. She realized she needed to do the same with patients instead of waiting to talk about hospice late in the disease process.

“I get sad when I hear a physician say, ‘There is nothing left to do.’ That’s the stigma that hospice is trying to eliminate,” Sprinkel said. “There is never a time when there is nothing left to do. We can provide compassionate care and love an individual. They can be offered emotional, spiritual and psychological healing.”

Most physicians were trained to intervene in the disease process and are not comfortable talking with patients about what might happen. Sprinkel said Carilion is training family doctors how to have those difficult conversations.

“He sits me down and says, ‘Lisa, we have found that you have lung cancer or pulmonary obstructive disease. Let’s talk about what that means now,

and what it means when things progress.’ That’s a conversation that needs to occur over time and with family,” she said. “Our focus is to initiate the conversation earlier, so that decision makers know what your goals, wishes and values are over time.”

Sprinkel knows how difficult it can be to talk about end-of-life care. Her father is 80 and her mother 75.

“It’s still not pleasant for me to talk with them.

Because I’m the daughter, there is a reluctance to engage in a discussion,” she said.

Ranson has lost both her parents. They were living in a retirement community when her father entered hospice care.

“He had heart disease and was declining. One day he said, ‘Susie, I don’t know why this is happening to me. I’ve done everything the doctors told me to do.’ He was 86,” she said. “I said, ‘Dad, it’s like your car. You can get the oil changed and take good care of it, but eventually it’s going to wear out. Your body is wearing out.’ ” One night he had a headache. Ranson suspects he had an aneurysm as he became unresponsive. As a nurse, she knew nothing would halt the disease; as a daughter, she began to question if they should do more.

Then a friend of her parents called, upset and wanting to know why she hadn’t taken her father to the hospital.

“I said, ‘Well, he doesn’t want to be there,’ ” Ranson said. “As soon as I said that, in my mind, that resolved everything when I remembered he was the one who made this decision.”

The woman then said she was concerned because she heard he wasn’t eating. Ranson explained, as she has with many families, that is a natural part of the dying process.

A Sacred Death families often worry that they aren’t capable of car-

ing for a dying relative. Ranson said too many in the medical community also don’t understand what hospice does to support families.

“We sometimes hear physicians in the hospital say to patients and family, ‘Your mom can’t go home.’

Well, why not? There is almost nothing we can’t do in the home,” she said.

Hospice does not provide around-the-clock care, but services are available 24/7. Families are taught

the skills they need. The hospice team meets at least every two weeks to review patients’ needs.

“We’ve seen families that when you walk in the room you think they may not pull this off. And they do,” Ranson said. “There are families who can’t for very valid reasons.”

Not all patients can go home, and not all patients have family or friends who can care for them. Hospice services can be delivered in assisted living facilities, rest homes and nursing homes. In some states, hospice houses run by hospice agencies provide a serene setting and allow families to be families and not become exhausted by being caregivers. But few hospice houses exist in Virginia, and there are none west of Bedford.

A group in the New River Valley is working to raise funds to build a hospice house, and hospice caregivers in the Roanoke Valley said one is needed here. The financial challenge of building, staffing and maintaining one has so far proved too daunting.

For now, hospice social workers can help to cobble together friends, neighbors, church members and other acquaintances to help a patient stay in her home. The effort isn’t always successful.

Meanwhile, Ballentine said the goal of hospice is “to reduce pain and anxiety and to be surrounded by those who love you best in the setting of your own home or one that is comforting to you.”

At the end, most people just want to go to sleep.

Often they are ready but their families are not.

She recalls one of her favorite experiences involving a big family that started with pleas to Grandpa not to leave but ended with them cheering him on.

He had a king-size bed, and they were all piled up with him, and me, too. They were saying Italian stories and telling him of all the good things he’d done with his life, and when he took his last breath, everyone sighed with him.

They cried and told him what a good job he did.

Then everyone prepared his body, washed him and got him dressed.

That, to me, is a good way to go. You come into the world, everyone is cheering you on, and with a whole group of people loving you.When you go out, they look at all the great things you did. It’s joyful. It’s a very sacred thing.

Some deaths are a little more quiet than that, but no less sacred.

Photo STEPHANIE KLEIN-DAVIS, THE ROANOKE TIMES

Editor’s Note ‘ Lee Graves Sr. died Sept.

27, 2017, at his Orange Avenue home, where he was again under the care of Carilion Clinic Hospice nurse Shirley Ballentine. It was the third time he entered hospice care — previously, he had “graduated” the program because his health improved enough that he no longer qualified. Here, Graves’ daughter, Gayle Graves, serves him a snack in May 2017. Lee Graves was the personal chef to four presidents of the Norfolk & Western railroad.

A Place To Find Peace

42

From Final Wishes: A Series on Navigating Life’s Last Journey Reprinted from The Roanoke Times with the permission of the publisher. © 2017 The Roanoke Times

many communities have hospice ho u ses , a home - like setting for dying people with nowhere else to go . b u t not roanoke .

LUANNE RIFE The Roanoke Times By

Photo ERICA YOON, THE ROANOKE TIMES

Centra’s Bedford Hospice House, 45 minutes away, is the closest one to Roanoke.

43

Death doesn’t frighten Christine Slade nearly as much as dying.

44

Breast cancer’s insidious assault riddles her body, refusing to stay hidden. An ulcerating tumor pierces her skin, and Slade knows that too soon, she will die.

She is, as one might suspect, frightened of the unknown. Yet it isn’t the hereafter she fears most.

She’s terrified that, at the very end, she has no place to die.

Slade neared death once before — although, as it turned out, not from breast cancer but from the poisons intended to kill it. She prepared well. She entered hospice, gave away all that she owned, said goodbye to all she knew, and when she became too ill to eat for nearly a month, she entered a nursing home for what she thought would be her last days.

There are fates worse than death, and Slade recoils at the horror she endured there.

Somehow, her body healed.

Christine Slade wanted to live out her remaining time in a homelike setting with skilled caregivers to offer comfort, but Roanoke has no such place. “What I want is the same courtesy that ... Angels of Assisi are giving to cats and dogs,” she said.

Photo HEATHER ROUSSEAU, THE ROANOKE TIMES

Time and disease progress and fatigue washes over Slade. By mid-summer, freeing her bed from its sofa mooring has become too much of an effort.

Most nights she folds a thin blanket and crawls into it like a sleeping bag to rest beneath the window of her studio apartment on Campbell Avenue.

By summer’s end, even this has become impossible. She no longer gets by on occasional meals and herbal medicines dropped off by friends.

She needs a place to die.

“Where am I going to go? I will never go in a nursing home again. Never. I will jump off the roof of a taller building than this before I will go into a nursing home,” she said from her second-floor flat. “What I want is the same courtesy that my neighbors Angels of Assisi are giving to cats and dogs.”

She wants to live her last months, weeks or days in a hospice house, in a homelike setting with skilled caregivers to offer comfort.

That’s too much to ask in Roanoke.

A Culture Of Acceptance

30% ‘ Percentage of people who enter hospice care in the New River Valley, compared to 45 percent nationwide.

Families can be reluctant or unable to take on caregiving in their home.

in virginia, hospice services are delivered mostly in people’s homes with their family enlisted and trained to become 24-hour caregivers.

But while hospice agencies bring in nurses, therapists, social workers and other health care workers and volunteers, not all families are able or willing to step into what can be exhaustive roles.

Some people opt, as Slade did, to die in nursing homes, assisted living facilities or rest homes, where they can still receive hospice services.

Two of Virginia’s neighbors — West Virginia and North Carolina — have hospice houses in many communities. These are homes with a residential rather than institutional feel and usually blend into neighborhoods. Hospice nurses and other health workers see to the residents’ needs while family and friends remain just that, and not caregivers. Gardens, common rooms and kitchens for friends, families and residents to visit and share meals are among the amenities.

There were fewer than eight places like that in Virginia in 2017. The closest is a recently opened four-bedroom home in Bedford. In North Carolina, there are more than 50 hospice houses, said Anne Campbell, who for the better part of a decade has been part of a volunteer group working to bring one

to the New River Valley.

Campbell, a retired nurse, is president of the Sojourn House board. She thinks culture plays a huge role in the lack of hospice houses here.

“There is a higher utilization of hospice services in North Carolina,” she said. “Because of the presence of hospice houses, they feed into a culture of more acceptance of end-of-life care.”

Nationwide, about 45 percent of people who are dying enter hospice care, while in the New River Valley, only 30 percent do, said Tina Smusz, a retired doctor and vice president of the Sojourn board. Without hospice houses, families can be reluctant to take on that role in their own homes.

Sojourn has looked at why Virginia lags its neighbors.

“Some people have tried to say, ‘Oh, the regulations are much more stringent [here].’ But when we looked at the regulations, they aren’t that different,” Smusz said.

Medicare, the predominant payer of hospice services, drives staffing requirements. For instance, a registered nurse must be present if a patient requires a level of care that can only be delivered in a hospitallike setting.

Virginia requires hospice agencies to run hospice houses.

Both of the area’s not-for-profit hospice agencies are represented on Sojourn’s board. Sue Ranson, the president and CEO of Good Samaritan Hospice, and Lisa Sprinkel, director of Carilion Clinic Hospice, said there is a need for hospice houses in the New River and Roanoke valleys but given the current insurance reimbursement rates, their agencies could not sustain one.

Even nonprofits can’t operate in the red and risk the ability to continue to provide services to people in their own homes.

“It takes a commitment of caregivers, volunteers and fundraisers to operate,” Sprinkel said. “You cannot go into a community and plant it. It needs a community of engaged individuals.”

Insurers pay a flat fee for hospice care that covers the doctors, nurses, therapists, dieticians and hospital beds and medication. Medicare allows $150 a day for hospice benefits wherever they are delivered.

But that doesn’t cover all of the expenses in a hospice house.

“Hospice care is typically given in someone’s

A Place To Find Peace

45

home — however that is defined — which may be their home they lived in all their life, their nursing home, or rest home bed,” Campbell said. “Your Medicare isn’t paying for your Kroger bill or your mortgage. The same is true if you need to go into a hospice house. Medicare will pay a per diem fee, but they aren’t going to pay your room and board.”

While residents could be charged out-of-pocket fees, often those who need a hospice house are like Slade and cannot afford to pay.

Medicare will pay a higher reimbursement rate that covers room charges but only if a patient needs a level of services that would be available only as an inpatient. If all patients qualified for the higher rate, the dollars might make more sense for operating a hospice house.

illnesses.

“We would have a patient who could no longer be cared for at home for a number of reasons. The wife has used up family medical leave, the spouse is too weak to care for them, it’s a young family and they don’t want for the children to always know that’s the room where Mom died,” Smusz said. “There is no place for them to go. By default, they end up in the hospital, but that’s not the best place to go because hospitals are about fixing. They’re not about supporting the most comfortable dying process.”

Smusz said people need to do the hard work of dying and to say their goodbyes, I love yous and I’m sorries in a peaceful setting of a hospice house.

“There is a lot of joy and happiness in those settings that people don’t understand until they are

What is a hospice house?

These are homes with a residential rather than institutional feel and usually blend into neighborhoods. Hospice nurses and other health workers see to the residents’ needs while family and friends remain just that, and not caregivers. Gardens, common rooms and kitchens for friends, families and residents to visit and share meals are among the amenities.

Ranson said she keeps running the numbers with various bed counts and insurance mixes but comes up with the same result: Hospice houses are money losers.

“Inevitably they end up losing six figures,” Ranson said. “That being said, that’s not to say we shouldn’t do it.”

Ironically, the alternative can prove more costly for insurers when overwhelmed families call for an ambulance to take their dying relatives to the hospital.

This is what Smusz saw too often as an emergency room physician. It prompted her to retrain in 2004 to specialize in palliative care, which focuses on providing comfort during the end of life rather than continue intensive medical interventions.

She wants better options for people with terminal

46

A Gift of Decisions on End of Life

there. It’s a universal experience, and we can get this one right,” Smusz said. “We have to build a safe haven.”

Campbell, a retired nurse, said she sees a parallel with beginning and end-of-life care.

“I worked in obstetrics at a time when consumers were driving the Lamaze and prepared childbirth experience,” she said. “I see that transition starting to happen with some consumer-driven pressure on the medical establishment about end-of-life care.”

A Hospice House For The NRV the sojourn group formed eight years ago to bring a

hospice house to the New River Valley. They’ve spent the time developing a wealth of knowledge about regulations, requirements, architecture and all that

Illustration SHAWN GARRETT, THE ROANOKE TIMES

[A hospice house] takes a commitment of caregivers, volunteers and fundraisers to operate.

You cannot go into a community and plant it.

It needs a community of engaged individuals.”

LISA SPRINKEL CARILION CLINIC HOSPICE DIRECTOR

goes into providing the right care and setting for the dying. They’ve visited a number of hospice houses in other states. Until recently, the Sojourn Center remained just a plan.

Then in May, developer Roger Woody gave Sojourn 27 acres near Warm Hearth Village.

“I felt like this would be a great place for someone in their last few days. I can’t think of a better thing to give it to,” Woody said during a walk around a clearing soon after the donation.

Once the deed was recorded, Sojourn board members hosted a meeting to share their plans with neighbors to build a seven-bedroom hospice house with gardens and trails, possibly even one that connects with the Huckleberry Trail at the rear of the property. The grounds would be open to the community, since being part of a residential setting is at the heart of a hospice house.

Construction is at least three years away, but now that Sojourn has the land, the board plans to launch a campaign to raise $5.5 million to build and maintain the home and to create an operating cushion.

One board member, Tim Haasken, who is the CFO of LewisGale Montgomery, said he’s ready to give more than his time and talents.

“When Sojourn Center approached me, I hadn’t given the matter much thought. I had somewhat taken it for granted that there would be some hospice house, at least in the Roanoke area,” he said.

Haasken, originally from Northern Virginia, had been working in Phoenix in a similar role before joining LewisGale. While in Arizona, his parents and niece came for a visit.

His father and niece borrowed his and his wife’s bikes to ride around the neighborhood.

“This is a testament to the value of bicycle helmets,” he said. “My dad rode my bicycle without a helmet and the bicycle was too big for him. He just lost control and hit his head on a curb and had a cerebral bleed. It was basically the end.”

His father was admitted to a neural intensive care unit; tests confirmed there was no reason for hope, and the family knew through an advance directive that he did not want to be on life support.

Haasken’s hospital had a wing that was leased to a hospice agency.

“It was immediately adjacent to the intensive care unit. From an appearance perspective, it was very sterile, very cold. They try to make certain cosmetic

changes, but at the end of the day, you’re in a hospital room,” he said.

The family was offered a better option and transferred Haasken’s father to a hospice house that looked like any other in the neighborhood.

“It was definitely much more peaceful. In a neural ICU there is so much activity, and it’s stressful. There are patients coming and going, and candidly some are not making it out of the hospital and you are faced with that,” he said. “It is much more relaxing to go to a beautiful house with landscaped gardens and fountains. It’s still tearful to lose your loved one, but it’s a much more intimate atmosphere.”

“In Denial” for haasken ,

taking his father home was not an option. Nor would it have been possible for the family of LewisGale Montgomery physician recruiter Andrea Isenhour.

Her parents, Jim and Jewell Carter, lived in Charleston, West Virginia, where he retired as a warehouse manager for Kroger and was enjoying a parttime job at Avis when he became ill with lymphoma.

For a short while it appeared he was getting well.

“When that cancer came back, he couldn’t get out of the bed,” his wife said. One morning she tried to help him. She held a walker, while he pushed himself up. They both fell on the floor. She called for an ambulance, and her husband spent the next month in the hospital.

His kidneys were failing, his body swelled with fluid. Isenhour and her mother said they knew they could not take him home.

“He was just a big man. He was heavy, and he was accumulating all this fluid. My son and I tried to pull him up in the hospital bed — my son’s a big guy and I’m a nurse — and we couldn’t do it,” Isenhour said.

He was moved to a 24-bedroom hospice house.

West Virginia, like North Carolina, has hospice houses that are supported by their communities.

“It was on the top of a mountain. The gardens were absolutely a beautiful place, and you don’t have that clinical feeling.” Jewell Carter said the family benefited from the setting, but her husband was too sick to know.

“He could have sat in the gardens with the family if we could have gotten him there sooner,” Isenhour said.

A Place To Find Peace

47

She said her father missed out on some of hospice services.

“I think he would have benefited to go two weeks earlier,” she said. “The services he got were just endof-life care. They could have helped him understand what was going on.”

“Jim had such a heart that he’d get better. We were in denial. I couldn’t talk about it, and your dad wouldn’t have talked about it,” Carter said. “He said, ‘You know why I’m going up there. I’m going up there to die.’ He went in on a Saturday and made it to the next Saturday night.”

The family was familiar with the hospice house; other relatives, neighbors and friends had used it.

Carter said she’s heartened that a hospice house might be ready in the New River Valley when her time comes; otherwise, she wants her family to take her to West Virginia so she can die in the same hospice house as her husband.

“It’s a bad thing, but we’re all going to go through it someday. You aren’t going to get out of this world alive,” she said. “Where I live, there are a lot of widow ladies. It’s a very common thing for us to talk about in our age group, like 70 to 90.”

The Sojourn home is still years away.

A House That Feels Like Home a similar community group in Bedford decided about a decade ago that they needed a hospice house. While the Sojourn group set about researching regulations, financing and staffing, the Bedford group took a different approach. They raised funds and built a four-bedroom home.

They never quite got the licensing part worked out. Though hospice houses need financial support from a community, Virginia requires that licensed hospice agencies run them. Also, Medicare sought to curb costs and shifted its payment structure. The Bedford house venture was short-lived.

It got a new life once Centra Health took over Bedford Memorial Hospital and agreed to look into reopening the hospice house. Centra already operated a four-bedroom home in Lynchburg.

Terri Layne, business development manager for Centra hospice, said the people of Bedford then raised about $50,000 to bring the stick-built residential home up to current institutional fire and building codes. The house has a residential kitchen rather

48

A Gift of Decisions on End of Life

than the required commercial one, so three times a day, volunteers shuttle meals from Lynchburg to Bedford.

Layne offered a tour of the home, showing off a large, inviting living area that opens to a kitchen that families may use and to a separate dining room where they can share meals. There are smaller rooms for private discussions, a children’s play room, a quiet chapel with stained glass and four large bedrooms, each opening to a patio. The rooms are decorated differently, but each is equipped with recliners and fold-outs for family to stay through the night.

Handmade quilts hang along the hallway.

Centra staffs a registered nurse around the clock and brings in doctors, therapists, counselors and other hospice services.

“There are no set visitation hours. You can see your loved one at any time,” she said. Residents are just that.

They have the ability to have a whole house without the worries and stress to say, ‘Please excuse my house, I haven’t felt well.’ Instead they can say, ‘Come and have a cup of coffee with your friend,’ ” Layne said. “We use every minute for living. The outcome, the end, may be that, but this is about — whether you are here for a day or for four months — the living that goes on is so cherished. There is a special joy in that.”

Centra charges a sliding scale depending on financial need, she said, and does not turn away those who cannot afford to pay the room rental. The community, she said, continues to be generous with financial support and with volunteers.

“Truly, our goal is that this house feels like their home,” she said.

So far all the residents have been from the Bedford area. Layne said the house would accept someone from elsewhere provided he or she becomes a Centra hospice patient, and there is an opening. Since the home reopened in January, it has operated at capacity.

A Movement Too Late for christine slade ,

the Bedford home is too far. It would place an hour’s distance between her and her friends in Roanoke and would leave her isolated and alone at the end.

Cancer isn’t Slade’s only foe. Her liver cannot metabolize medication and even a Motrin leaves

There is a lot of joy and happiness in [hospice houses] that people don’t understand until they are there. It’s a universal experience, and we can get this one right. We have to build a safe haven.”

DR. TINA SMUSZ SOJOURN CENTER BOARD VP

Editor’s Note ‘ Christine Slade died Nov. 10, 2017, at the Berkshire Health and Rehabilitation Center in Vinton under the care of Gentle Shepherd Hospice. Slade did not want to die in a nursing home and spent the last year of her life advocating for a hospice house in the Roanoke Valley. She also started a Knitted Knockers chapter here to provide women who lost their breasts to cancer, as she had, with soft, lightweight prostheses.

Developer Roger Woody and Anne Campbell look over the 27 acres near Blacksburg that Woody donated to the Sojourn House board, which plans to build a 7-bedroom hospice house.

“I felt like this would be a great place for someone in their last few days. I can’t think of a better thing to give it to,” Woody said.

her feeling drunk and disoriented. For much of the summer she was able to control the pain with cannabis oil. But she knew she would need narcotics.

“I’m frustrated and I’m scared. I know what’s waiting for me, and it f---ing sucks. I cannot take morphine and fentanyl and live by myself,” she said.

“When I take those drugs, I require 24-hour care. On pediatric doses, the lightest you can get, I had to be helped up and down off the toilet. I wasn’t safe to get out of bed by myself.” She was having mini strokes.

“I’m praying these little TIAs I’m having will lead to a big one that takes me out,” she said. “But while I’m still here I’m making a difference. That’s what matters to me. That’s what quality of life is.”

By late August, the cancer had continued to spread, had claimed the sight in her left eye and was dimming the vision in her right eye. The pain became so intense she did what she had so wished to avoid and entered hospice care.

Friends checked on Slade while she waited to hear from a nursing home that would accept her as a Medicaid patient. She had no choice but to surrender to the inevitable, and on Sept. 5 she moved into a nursing home.

But she’s not ready yet to surrender her voice.

For the last year, she’s followed the hospice philosophy of living rather than dying, and of being useful.

Along the way, she discovered Knitted Knockers, a soft prosthesis for women who have had mastecto-

Illustration MATT GENTRY, THE ROANOKE TIMES

mies, and has helped to spread the word. She’s knitted and recruited knitters so that hundreds of local women have Knockers. Through that, she’s heard too many heart-breaking stories of other women like her.

She’s found a successor for Knitted Knockers.

She’s hoping she finds many successors to advocate for a hospice house in Roanoke.

“I do feel a time pressure,” she said. “I don’t feel time pressure to have a hospice house in place for my demise. I feel a pressure to use my voice while I still have a voice.”

She wants people to think about this.

“If you are dying and your family circumstances don’t allow the kind of care and support you need, there ought to be a comfortable place in cheerful surroundings that are well staffed for you,” she said. “It all comes down to hearts and culture.”

She’s impatient when people who know what a hospice house is tell her it’s too expensive or when people tell her that Roanoke has hospice care and direct her to an agency, not understanding the limitations.

“It comes down to a culture, or who has the money to speak up and make something happen. I don’t have the money to make something happen. I have the voice,” she said.

And with it, she shares an uncomfortable story.

Slade will die too soon. She has no place to rest in peace.

A Place To Find Peace

49

The Keeleys were better prepared than most to handle their parents’ deaths.

50

From Final Wishes: A Series on Navigating Life’s Last Journey Reprinted from The Roanoke Times with the permission of the publisher. © 2017 The Roanoke Times

I’m Ready To Go Home end - of - life decisions can be challenging — even for a well- prepared family full of doctors LUANNE RIFE The Roanoke Times

By

Photo HEATHER ROUSSEAU, THE ROANOKE TIMES

Xxxxx Story Name Here

51

Dr. Robert Keeley’s 92-year-old body was worn out by the time he checked into The Homestead in Hot Springs for a gathering of the University of Virginia Medical Alumni Association in February 2014.

He and his four physician children, all UVatrained, were being recognized at a black-tie gala, and Keeley was looking forward to being at The Homestead, a place so special to him and his wife, Nina, that some of their 15 children credit it for their start on life.

Now, though, the Keeley children worried that their father might not live through the weekend.

Three of his children — oldest son Dr. Bob Keeley, middle daughter and nurse practitioner Pam Cassell and youngest child Dr. Nina Sweeney — recently shared the story of their parents’ final chapters, of how they struggled to make the decisions accompanying certain death, and of how their experiences

52

A Gift of Decisions on End of Life

have made them more aware of difficulties patients and families face.

They recognize that they were blessed with a large, involved family that could balance the workload of caring for a terminally ill parent, the wealth to afford trained caregivers to ease the strain, and, for many of the siblings, the medical training that allowed them to understand and manage the disease process.

Still, the shroud of exhaustion settled upon them, and the siblings differed on when to cease medical interventions with their father. The decision to turn to hospice was easier with their mother, but it didn’t ease the angst of turning off her pacemaker and withholding food, water and medication or of agreeing on what was needed to ease her pain.

What the siblings all agree on is their parents’ devotion. Their affection for each other remained as strong as when they first met in 1944 at Duke University where he was a general and thoracic surgery resident and she a nurse.

Over the next six-plus decades, the Keeleys would grow their family and his career in his hometown of Roanoke, where he became a founding partner in Jefferson Surgical Center, chief of surgery at Carilion Roanoke Memorial and Carilion Roanoke Community hospitals and a professor of surgery at UVa. By late February 2014, Keeley was still working once a week at the Social Security Administration on disability cases, though six years of congestive heart failure had taken its toll. His children rattled off details of surgeries, procedures, complications and stubborn infections that left their once “fat, jolly daddy” skin and bones.

“He had what one of my old mentors used to call a case of ‘the toos.’ Too old, too sick, too many problems,” said his son.

Keeley had teetered too close to the edge a few times. A 2012 dinner, announcing that Carilion’s Healing Arts program would be named in his honor, nearly killed him. All the hands extended to congratulate, thank and wish him well also carried germs that taxed his frail body. Yet he rebounded and continued on what his children dub the farewell tour.

“We had the benefit of having a lot of people tell him how great he was. And that was awesome,” Sweeney said. “I don’t think many families get that opportunity.”

Dr. Robert and Nina Keeley were married for 65 years and had 15 children, many of whom followed their father into the medical field.

When it came to end-of-life decisions, they faced the same difficulties as nonmedical families in recognizing when it was time for their parents to enter hospice care.

Previous pages: Three of the Keeleys’ children — Dr. Nina Sweeney (from left), nurse practitioner Pam Cassell and Dr. Bob Keeley — visit the Keeley Healing Garden dedicated to their father on the Roanoke River Greenway.

Home Or Hospital? by the time of the uva dinner,

the family knew this was the finale. There would not be an encore.

Sweeney wanted to make it extra special so she called the hotel. “I said, ‘Listen, here’s the scoop. This is probably the last time my Dad’s going to be here.

I’m absolutely sure I was conceived in this room, can you make sure they have it?’ ” The Homestead accommodated.

“When we go up to this room, what was so cool, he was in a wheelchair, and he and Mom entered that room and the way they looked at each other was just amazing,” she said. “I just said, ‘I’ll see you guys later.

I’m going to the pool.’ What a sweet little gift to see.”

Once back in Roanoke, Keeley stopped by the

Photo COURTESY OF THE KEELEY FAMILY

Social Security office to say goodbye, then placed himself in the care of his son and a team at Roanoke Memorial.

“He gave us enough time to cure him if he was going to be cured,” said the younger Keeley, a pulmonologist and critical care physician.

“If it had been up to him, he would have gone home in a few days. But he was patient with us and allowed us to try to do the things we knew to do,” Cassell said.

Without such an effort, Keeley would have died within days. With it, he lived long enough to celebrate his 65th wedding anniversary, to see all but one grandchild, who lived overseas, and to visit with his extensive Carilion family who crowded into the hospital room.

“I’m Ready To Go Home”

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“In some ways this story is kind of peculiar. You hope that everyone gets treated the same, but he didn’t. He got treated like the king,” Keeley said. “On the other hand, all the service he gave to others over the years, I think it was an even trade.”

Two weeks passed, and the siblings differed on whether he should remain in the hospital.

Sweeney and Cassell wanted him home with hospice.

“I was ready to let him go early, but Bob, because you were the one writing the orders you probably felt more responsibility because he had resurrected so many times,” Sweeney said.

Keeley knew his father’s condition was dire but he and his colleagues were still trying.

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A Gift of Decisions on End of Life

“It’s like riding the crest of a wave. You either catch it or you don’t, and everything had to be perfect for him to get better.” It wasn’t, but Keeley had yet to reach that conclusion.

Throughout, the siblings took shifts sitting at their father’s bedside.

On a Friday evening in mid-March, Sweeney entered the room. Her brother Richard reported it had been a rough day. It had been a rough few weeks.

Their father was loopy and mostly out of it.

Exhaustion seeped into the darkened room.

Sweeney’s husband drifted to sleep with the Atlantic Coast Conference basketball tournament playing on television in the background. Sweeney exchanged texts with Cassell about a family meeting set for the

Dr. Robert Keeley and four of his 15 children, who are also physicians, were recognized during a February 2014 University of Virginia Medical Alumni Association dinner at the Homestead.

Photo COURTESY OF THE KEELEY FAMILY

morning to discuss what to do next.

“I said a prayer: ‘God, let him wake up and tell us what he really wants to do,’ ” she said. As if on cue, in between basketball games, her father woke up, looked at her, and said, “Give me my glasses. Who’s playing ball?”

Sweeney texted Cassell: Dad’s awake. Really awake.

Cassell replied: Ask him.

“I said, ‘Dad, we have to get serious.’ And he said, ‘Yeah, we do. You know the amount of money that has been spent on me the last two weeks is obscene.’

He goes, ‘I’m ready to go home.’ He shook his finger when he was really serious, and he said, ‘I want you to tell everybody,’ ” Sweeney said. “I said, ‘No, I’ve been saying that. I need you to stay awake and alert to tell everybody.’ ” So he did. He asked for their parish priest, and then for all the family to clear the room for his final confession. Keeley received Last Rites, and by Saturday afternoon, he was discharged into the care of hospice.

He went home to his condo, where 30 of his children and grandchildren gathered through the evening. He watched his beloved Virginia Cavaliers win and advance to the title game in the ACC. And then just after midnight, when all but his daughter Kathy had gone home, he slipped away.

A Missing Symbiosis what the keeley siblings did not know was that their mother’s health was slipping, too.

“Some of the things that happened right after Dad passed affected Mom’s health, and we didn’t realize it,” Cassell said. “One of the things you learn is how much two people live one life. Not only did they enjoy their lives together, but they kept each other up-to-date on their medications, their doctor appointments and how their day-to-day was going.”

“Symbiosis isn’t recognized until the half is gone,” Keeley said.

“As professional as we all are, and as intelligent as we think we all are, we didn’t pick up on that,” she said.

Nina Braddock Keeley was already experiencing dementia, but it was mild and stable. After her husband died, she continued to drive, go to the grocery store and attend Mass at Our Lady of Nazareth.

I said, ‘Dad, we have to get serious.’ And he said, ‘Yeah, we do. You know the amount of money that has been spent on me the last two weeks is obscene. I’m ready to go home.’

DR. NINA SWEENEY

DR. KEELEY’S DAUGHTER

Her children visited, but none knew that she wasn’t remembering to take her medication.

By fall they figured it out. She had failed to show up at Sweeney’s Cave Spring office for a flu shot. She said she had gotten lost. She got lost again returning home after lunch with Cassell and her mother-inlaw. And then she went on a trip, flying first to an airport in North Carolina where she was to meet up with one sister so they could travel together to visit a third sister in Kentucky. They missed their plane and didn’t think to call those waiting to pick them up.

She and her Kentucky sister, who also had dementia, became lost while on a walk, prompting a frantic search.

Once she was home, her children decided their mom would need round-the-clock help. They hired caregivers during the day at $17 an hour. Some siblings took evening shifts, and brother Richard spent the night.

It was stressful, but they were managing to keep her home as long as possible. That ended in August 2016.

Her dear friend, Cassell’s mother-in-law, had just died. Then a grandson died in a motorcycle wreck. The day before traveling to North Carolina for his funeral, she had dental work that could be performed only if she came off the blood thinners she’d been taking.

Her children think the dental work led to a stroke, but in their grief they failed immediately to notice her distress.

“On the way to the funeral, she was in the car and she kept saying, ‘I’m so dizzy.’ And I’m blaming it on my brother the way he was driving like a bat out of

“I’m Ready To Go Home”

55

hell, and I’m telling him to stop driving so crazy,” Sweeney said. But it wasn’t the driving.

It was a type of stroke that does not cause paralysis but damages the brain just the same. For Keeley, it hastened the pace of dementia, and required, for her safety, that she be placed in Brandon Oaks’ memory care unit.

Her children continued to hire daytime sitters and take turns in the evening getting her ready for bed.

“We did what we needed to do. But you think about families that don’t have this many people,” Sweeney said.

Or money. “Brandon Oaks is a lovely facility, and incredibly expensive. Those places are on the order of $6,500 a month, and we had an extra caregiver at $2,500 a month,” she said.

Their parents also had what many families lack: long-term care insurance and a son in the business who could navigate past denials.

Too Much vs. Not Enough the family settled into a routine

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and planned to

A Gift of Decisions on End of Life

gather at their lake house to celebrate February birthdays. Sweeney called ahead to say she’d be by shortly to pick up her mom. The caregiver replied that their mother was the happiest she’d ever been — best day ever.

“Then I get a frantic call from her as I’m in the car.

‘Your mom has fallen as she was brushing her teeth.

She’s down, and she’s not responding,’ ” Sweeney said.

She’d had a massive stroke. She would not recover.

This time, Keeley said his hospital orders differed: Make sure she is not having seizures, admit her to palliative care, then take her home with hospice care.

“Nina and I were on the same page about that, but some of our siblings were not,” he said.

“They were in denial,” Cassell said.

What the nonmedical siblings didn’t realize was that this meant no food, no water, no life-sustaining medication. That created a lot of angst.

“Food and water is not going to make her wake up and get out of bed,” Keeley said. “We just had to be supportive of the other family members. I had to explain it a couple different times in a couple differ-

Dr. Robert and Nina Keeley met when he was doing a surgical residency at Duke University and she was a nurse. He died in 2014, shortly after their 65th wedding anniversary; she would follow in three years. Their 15 children, many of them doctors and nurses, would struggle with decisions about end-oflife care.

Photo COURTESY OF THE KEELEY FAMILY

ent ways.”

They had to explain, too, about the limitations of hospice.

“Hospice is not there 24 hours. They can’t be,” Sweeney said.

“There’s this whole gap for what people are physically and emotionally able to do for their family member, and hospice — as wonderful as it is — is a limited resource.”

The Keeley family had the means to fill the void, but they know that so many families cannot. They see in their own practices the need for more comprehensive care for people who are dying.

But talking about death care isn’t easy. Not in the broader sense of building a stronger support system, not in advising patients to think of what they would

signal a transition to the end.

“Mom was having more discomfort with her breathing when we turned her to one side. Hospice said if you turn her she’s going to pass,” Cassell said.

“So we didn’t turn her. We called in all the family.”

Just as they did every night while growing up, the siblings gathered in their parents’ room to say their prayers. They sang and reminisced. Then they turned her. And nothing happened.

When the time did come, Cassell knew. She describes it as “one of the most beautiful experiences I ever had.”

“Mom was settling into a slower breathing pattern. She was quiet, she wasn’t restless, she was looking right at me,” she said. “I just talked with her and prayed with her. If I could have sung, I would have.

Some of the things that happened right after Dad passed affected Mom’s health, and we didn’t realize it. One of the things you learn is how much two people live one life. Not only did they enjoy their lives together, but they kept each other up-to-date on their medications, their doctor appointments and how their day-to-day was going.”

PA M C A SS E LL

DR. KEELEY’S DAUGHTER

want, and not in the micro sense of determining how much pain medication is needed to bring comfort.

The family wrestled with this.

“There was a significant discomfort level across the board about what’s too much and what’s not enough,” Sweeney said. “You have all these people who love her dearly that want to do her right. And we’re Catholic. Let’s face it. We don’t want to hasten anything.”

“Some of us were, ‘Are we going to kill her with the medicine?’ Some of us were, ‘Who cares?’ ” Keeley said.

For 17 days their mother lingered, not getting better, not getting worse, and not bringing clarity to some siblings, who thought they should do more.

Hospice had coached them on signs that would

But I didn’t. That would have kept her around.”

Cassell smiles at the thought, but her voice wavers and tears well as she continues the story.

“I woke up Richard and John and said, ‘You need to come say goodbye because it’s happening in the next few minutes.’ They were able to come and join me,” Cassell said. “Who gets to do that? That’s one of the things hospice allows families to do is to say goodbye to your family member in the most peaceful way possible.”

Nine days shy of the third anniversary of her husband’s death, Nina Keeley joined him.

If there are any regrets, Cassell said there is but one. On the night Dr. Robert Keeley died, his wife wished that instead of kissing him goodnight, she had kissed him goodbye.

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Palliative care helps keep patients comfortable near the end of their lives.

Where No One Dies Alone 58

A Gift of Decisions on End of Life

a C arilion program strives to give dignity to a patient ’ s final moments LUANNE RIFE The Roanoke Times By

Outliving Loved Ones after a year of planning, Carilion Roanoke Memo-

Chalet Orr had barely entered adulthood when her Granny’s health rapidly declined.

Phyllis Whitehead (on left), a clinical nurse specialist, and Laura Boyd, director of the palliative care unit at Carilion Roanoke Memorial Hospital, worked together to initiate a No One Dies Alone program for the unit. The program has expanded to pediatrics, and other departments are asking for it as well.

One evening the family crowded into Granny’s nursing home room. Orr was perched next to the bed. Granny reached for her hand.

“Her beautiful blue eyes, I can still see those looking into the room. I don’t think it was pain, but a little bit of ‘I’m scared and I’m glad you are here, and I don’t want people to leave me’ kind of face,” she recalled.

Eventually, Orr stood to leave and Granny’s hand slipped from her grip.

“In my heart, I knew that evening when I hugged and kissed her goodbye that was going to be the last time,” she said.

In the early morning hours, Orr’s mom came into her bedroom. The nursing home had just called.

Granny had passed.

“I’ve always wondered if there was a nursing home staff with her, or if she was lying in the room alone,” Orr said. “Honestly, I don’t want to think of her being by herself.”

That worry stuck with Orr, so when the call went out to the Carilion Clinic family looking for people willing to sit with patients who are dying alone, Orr, a secretary in Carilion’s pediatric department, answered. She didn’t know what to expect with this new volunteer duty, as Granny’s experience was her only one with death and dying. But Orr felt blessed and honored that she could provide comfort to someone in his final moments.

From Final Wishes: A Series on Navigating Life’s Last Journey Reprinted from The Roanoke Times with the permission of the publisher. © 2017 The Roanoke Times

rial Hospital in November 2015 launched a pilot of the No One Dies Alone program in its palliative care unit.

The 10-bed unit is where patients stay when they are nearing the end of their lives and are seeking comfort care and symptom management. Patients stay a few hours or a few weeks. About a third of the unit’s patients will enter hospice care and go home or to a nursing home. The others will die on the unit. Mostly, they are comforted in their last hours by family and friends who often stage vigils, said Phyllis Whitehead, a clinical nurse specialist who works throughout the hospital but whose focus is on palliative care.

Not all patients are so fortunate.

“They have outlived their loved ones, or they don’t have family or friends,” Whitehead said.

Sometimes physical distance prevents relatives from reaching the hospital in time. For others, a lifetime of emotional distance leaves them isolated.

Whatever the reason, Whitehead wanted to start a program so that they would not be alone in their last hours.

“The dying process is an interesting thing. When you’re talking about the last few hours of your life, you are typically not interacting a lot,” she said.

“Hearing remains intact. There’s an assumption made that it’s a basic human right, that unless it’s the preference of the individual, people don’t like to be alone.”

But palliative care unit nurses, who have as many as five patients in their care, cannot linger with one.

Whitehead had heard about a program called No One Dies Alone and sought an allegiance with Carilion’s volunteer coordinator, Shanna Flowers, in late 2014. Together, they spent the better part of a year setting up the pilot, recruiting and training volunteers and fine-tuning a text-alert system to let the volunteers know when a palliative care patient is dying alone.

The program has expanded into pediatrics and may soon reach other floors, including the emergency department, which cares for patients with lethal injuries who are brought in from accidents all over western Virginia, and whose families might not even know yet.

Photo STEPHANIE KLEIN-DAVIS, THE ROANOKE TIMES

Where No One Dies Alone

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‘Outpouring Of Support’ no one dies alone began in an Oregon hospital in 2001, although the seed was planted 15 years earlier when Sacred Heart Medical Center nurse Sandra Clarke was at the beginning of her career.

Clarke writes on her hospital’s website that she was beginning her shift when a frail, elderly man with a Do Not Resuscitate order asked in a barely audible voice, “Will you stay with me?” She promised she’d return as soon as she looked in on her other patients. But as often happens in hospitals, she became busy and was delayed.

An hour and a half later, she returned to the man’s room and discovered he had died. Alone.

“I looked around. Scores of people were nearby providing state-of-the-art patient care,” Clarke wrote. “For this man, state-of-the-art should have been dignity and respect.”

Not long afterward, she transferred to the intensive care unit and noticed that no one died alone there. ICUs typically have the lowest nurse-topatient ratios, so when a patient nears death, his nurse can stay at his bedside.

For many years, Clarke talked with others at her hospital about starting a program in which staff members would volunteer to sit with dying patients who lacked family or friends. For 14 years she heard all the reasons why such a program wouldn’t work, but then she captured the attention of the pastoral care staff. Together, they created No One Dies Alone, or NODA. Sacred Heart provides information to other hospitals seeking to begin NODA, but there’s no formal program with set rules, nor is there a registry to know how many hospitals have adopted a similar program. Each hospital tailors NODA to fit its own circumstances.

When Whitehead heard of NODA, she wanted to bring it to Roanoke Memorial.

“It was amazing the outpouring of support,” Whitehead said as Carilion staff joined a planning committee.

They decided to start small, with a pilot in the palliative care unit, and to keep the circle tight.

“Because of sensitivity, we started with employees or volunteers, someone from the Carilion family,” Flowers said. Several months ago, they opened it up to people outside of Carilion as long as someone

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A Gift of Decisions on End of Life

from the health system can vouch for them.

“We have to make sure we have the right person in place sitting with these people in these very tender moments,” Flowers said.

As with all Carilion volunteers, they are required to have an annual health screening, flu shot and tuberculosis test; pass an initial drug screen and criminal background check; go through a general training session and interview with Flowers. NODA volunteers receive additional training and a tour of the palliative care unit.

“Sometimes after people go through the initial training, they find out this is something they can’t do. That’s why after the training we bring them to the unit to do an orientation,” said Carilion chaplain Helen Moe, who volunteers as the NODA coordinator. “One time we had a volunteer say, ‘You mean, they really die?’ You have to be really sure this is something you want to do.”

While more than 60 volunteers have gone through the training, only 35 have sat with patients.

During the first year, volunteers were requested for about a dozen patients. To date, they have sat with 20 people. Initially, Moe was finding it easier to fill evening and weekend shifts than weekdays. For three patients, no volunteers were available. The problem was addressed through another round of recruitment and training that looked for people available during those hard-to-fill daytime hours.

‘Not Alone Anymore’ when nurses sense a patient has but a day or so left,

they contact Moe. She then sends out a text alert to all the volunteers, and those who can sit with the patient text back their availability.

From the first alert that went out the day before Thanksgiving 2015, Moe has been able to count on a response from Arden Howell of Christiansburg.

Howell survived a bout with cancer seven years ago but had to take early retirement from his job in industrial maintenance.

“I was surprised at how long it took me to recover,” he said. About a year later, with his energy restored, Howell decided to volunteer. At what, he wasn’t sure, and then he saw a New River Valley newsletter about volunteers, and the first item was for hospice volunteers.

“I was shy and reserved, but I thought, ‘Well, I

How It Works ‘ When nurses sense a patient has but a day or so left, a text alert is sent to all the volunteers, and those who can sit with the patient text back their availability.

Volunteers who can sit with a patient, even those with medical training, are not permitted to provide any care, but do take notes for family members and other volunteers and confer with nurses and clergy where appropriate.

Hearing remains intact [in a dying patient].

There’s an assumption made that it’s a basic human right, that unless it’s the preference of the individual, people don’t like to be alone.”

PHYLLIS WHITEHEAD CARILION CLINICAL NURSE SPECIALIST

can sit with someone for an hour and maybe talk with them,’” he said.

His first patient lived in Hillsville.

“The first time I met him, we talked for three hours, and every week after we talked for three hours. It changed my life, and he became one of my closest friends,” he said. “Every time I’d leave, I’d say, ‘Darryl, I’m not going to say goodbye. I’m going to say I’ll see you later. I’ll see you in your chair, or I’ll see you when I get to heaven.’”

Howell feels as though God signs his checks now.

He sees five hospice patients on a regular basis, and when Moe texts that someone is alone and dying, he gets there.

“You can sit in a dark room and know if someone walks in and that you’re not alone anymore,” he said.

He sat with one man until his family, who lived several hours away, could arrive. He sat with another man who lived in a nursing home and had outlived his family.

“The people where he had been living made homemade cards out of construction paper and had written words to encourage him. So I read his cards to him,” Howell said. “His family was at the nursing home.”

Expanding To Pediatrics at Roanoke Memorial have asked that NODA expand beyond palliative care.

“The overall goal is as we recruit volunteers, it will expand because patients are dying across the hospital. But we had to start small, and really work out the kinks to make certain we have enough resources to cover the demand,” Whitehead said.

Moe understands the need, especially for the emergency department, which sees most of the people critically injured throughout the region.

When Moe was an intern and was the only chaplain in the hospital, a nurse called about midnight and told her about a young man, without identification, who had been struck by a truck on Interstate 81. His head injuries were lethal.

“She said, ‘I think the least we could do before he dies is pray with him.’ So we went in and had a prayer. She had to go back to work. I thought, I can’t leave this child here by himself. I’m sure he has a mom and a dad, and nobody knows he’s here,” she

said.

Moe pulled up a chair and sat with him until he passed early in the morning.

“It’s such a privilege to be there in that time for them. It’s just the most rewarding thing a person can do is to give a little of your time to someone who has no one,” she said.

NODA recently expanded into Carilion Children’s Hospital.

“Six or eight months ago, I got a call from one of the pediatric doctors who said, ‘We have a dying child and their parents aren’t able to be there. Is it possible to have a volunteer come and sit with them?’” Whitehead said. “I then reached out to the pediatric floors and found, yep, this does happen.”

It doesn’t happen often, and it hasn’t happened since NODA has been available.

She expects NODA volunteers might be asked to sit with a child whose organs are going to be donated during the time between brain death and when transplant arrangements are made.

“The child can’t be aware of what’s happening, so this is in support of the nursing staff, who will know there is a volunteer there at the bedside,” she said.

The NODA volunteers have helped the palliative care nurses.

“It’s an emotional relief that there’s someone at the bedside, and if there are any changes, they’ll be quickly notified,” she said.

other departments

‘He Wasn’t Alone’ volunteers,

even those with medical training, are not permitted to provide any care.

They are asked to sign in, then jot notes in a book to communicate with other volunteers, the nursing staff and even family should they arrive from out of town. They are also advised to talk with a chaplain or a nurse.

When Orr answered Moe’s text alert for the first time, she wasn’t sure exactly what to expect when she entered the room of a dying patient.

“He was nonresponsive. His eyes were shut.

I pulled my chair close to him, and I just laid my hand on top of his, and talked to him a little bit,” she said. “I hummed quietly, and sang some songs to him, and I felt his hand tighten on mine, and it just let me know that he knew somebody was with him and that he wasn’t alone.”

Where No One Dies Alone

61

The Gift Of Time a va . tech professor credits hospice with helping him e x tend his life by more than a year LUANNE RIFE The Roanoke Times By

62

A Gift of Decisions on End of Life

Photo MATT GENTRY, THE ROANOKE TIMES

Jack Dudley said hospice has eased his time by making him more comfortable.

Reprinted from The Roanoke Times with the permission of the publisher. Š 2019 The Roanoke Times

63

For nearly two decades, Charles “Jack” Dudley shepherded the brightest scholars through Virginia Tech’s honors program.

But he didn’t know until he fell under the tutelage of a Carilion Clinic hospice team how to live while he was dying.

In November 2017, Dudley’s dueling diseases had the better of him. Medication to help his chronic obstructive pulmonary disease worsened his diabetes.

“I had these two doctors. They are wonderful, but they constantly debated whether I should breathe or go into a diabetic coma.” Dudley chuckled a moment before continuing with his story. He had fallen twice in the shower, necessitating calls for help from EMTs, and tests and readings of all the things measured to track diseases looked dreadful.

His family doctor said it was time to call hospice.

“It scared the hell out of me,” said Dudley, who thought “you had to be ready to die and keel over for hospice to come in.”

That’s not true, but that’s the way hospice is still mostly used. Nearly 28 percent of hospice patients nationwide have hospice service for less than a week.

Dudley’s care is unusual in that he’s had hospice services for more than a year. Without the comfort care, he believes he would have died last winter.

“In hospice, I can’t add days to your life, but I am

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A Gift of Decisions on End of Life

going to strive to add life to your days. In Jack’s case, we’ve been able to do both,” said his case manager, Nicole Thompson with Carilion Clinic New River Valley.

Hospice is an insurance benefit that is available when someone has an incurable disease and is expected to die within six months if the course of the illness does not change. Instead of continuing to treat the disease, hospice focuses on making a person feel comfortable in their final stage of life.

“When I first started hospice, I spent a good bit of time wishing I would just die because it was so hard to breathe, and getting through the day was so difficult,” Dudley said, “Over a period of time, these people have given me tools to make the difficulty less.”

Dudley, who is now 78, hasn’t been to a doctor’s office in more than a year. He’s certain that Medicare’s daily payment for hospice care is far less than he would have spent on doctors, tests and hospital stays.

“I’m being taken care of, my medication is dispensed. I have not been to a doctor since I’ve been in hospice. It’s got to be less expensive than me, an ignorant fool when it comes to medical care, running to the doctor every time I get a slight symptom,” he said.

It’s hard to compare costs. Dudley did not have receipts for the year prior to entering hospice and there is no exact way to tally the medical charges he would have incurred if he had continued treating his illnesses.

Research on cost comparisons is limited. But a study published last year in the Journal of the American Medical Association’s Internal Medicine found statistically significant reductions in costs with palliative care, and Medicare reports that about a quarter of its patients who die each year do so in the hospital and that many of them had been admitted to expensive intensive care units.

Dudley’s other point is that hospice services are priceless in that they helped him live better.

He’s had the opportunity to examine his life through music therapy and the time to see his granddaughter turn an age where he can glimpse her future. He knows now that she and the other three women in his life — his wife, daughter and daughterin-law — will be fine once he passes.

“They are where any person wishing for the very

The team that helps Jack Dudley includes (from left) certified music therapist Kelly Sweeney, nurse’s aide Cindy Powell and case manager Nicole Thompson.

28%

‘ The percentage of people nationwide who receive hospice care for less than a week. Jack Dudley’s case is unusual in that he has been in hospice for more than a year.

“In hospice, I can’t add days to your life, but I am going to strive to add life to your days. In Jack’s case, we’ve been able to do both.”

NICOLE THOMPSON

CARILION CLINIC NEW RIVER VALLEY

best for people to be. They all have their lives organized where the future for them is one they’ve chosen. It’s noble, and they are really quite wonderful,” he said. “I got time to help sort it all out. How wonderful can it be? If I had died last November it would have been terrible. I wouldn’t have had that.”

‘Unbelievably Wonderful Life’ jack and larkin dudley met as students at the Uni-

versity of Georgia. On Feb. 5 they celebrated their 54th wedding anniversary, and the following day their granddaughter’s Sweet 16.

They both taught at Tech. Jack Dudley, a sociology professor, directed the honors program before retiring in 2008, and Larkin Dudley was director of the Center for Public Administration and Policy.

Two years before he retired, Dudley began to have trouble breathing and would use oxygen at night.

He continued teaching after retiring, but he found it increasingly difficult to get through a two-hour class.

Then, on the day after Thanksgiving 2012, his son died. He was no longer able to teach or do much else.

Photo MATT GENTRY, THE ROANOKE TIMES

He said he suppressed a year of his life.

Talking about the loss is difficult. He would rather expend his limited energy on other topics.

“I lived an unbelievably wonderful life, and had my son not died it would have been a perfect one,” he said.

Through hospice, Dudley said he was able to review all that was wonderful. He has remained in his Blacksburg home, and the hospice team has taught Larkin Dudley how to care for her husband. She jokes that she’ll return to school after he dies for a nursing degree in which she specializes in catheters.

Larkin Dudley is her husband’s primary caregiver.

He realizes that many days turn messy with sickness.

“Very few people are around when I’m throwing up all over the place and it needs cleaned up,” he said. “There have got to be days that she looks at me and says, ‘What have I signed up for?’ But she does unbelievable things every day.”

It was important to him that Larkin continue her life outside of his care and that she go to her book and bridge clubs and church activities. A hospice volunteer comes during the week, and nurse’s aide Cindy Powell comes twice a week. They time their visits for when Larkin will be out.

The Dudleys continue to enjoy each other’s company knowing that it, too, will soon end.

“You cannot prepare for that kind of loss or void in your life. Someone asked me how I felt when my son died. Well, if you go through life you have few joys. You have so many feet of joy,” Larkin Dudley said while spreading her arms wide. “When you lose somebody, you can never be that joyful again. I figure when one of us goes, that loss of companionship can never be quite as joyful as you once were. You just have to learn to live with that.”

Music As Memory thompson , dudley ’ s case manager , drops by his Blacksburg house once a week, more if necessary, to see how he’s feeling.

She came to hospice after working as an intensive care nurse and at first found it disjointing to not rely on test readings.

“We don’t do a lot of looking at numbers. We want to know how do you feel and what can we do to make you feel better,” she said. “Medications are adjusted just on how you feel.”

The Gift Of Time

65

She finds ways to help Dudley breathe, keep his blood sugar levels stable and remain comfortable.

Thompson also helps him set goals. Last winter, Dudley wanted to live to see the cherry trees bloom.

When that came and went, he wanted to watch one more Fourth of July parade in Blacksburg, and then to vote in the elections and now again to see the cherry blossoms.

Dudley set a separate goal with Powell, who helps him bathe. “Don’t ever let me smell like an old person,” he said.

Dudley also has the services of music therapist Kelly Sweeney, with whom he sought to review his life.

“So we used music from the time he was a child to modern day,” she said. “We use music for emotional support and processing.”

They started with the church hymns of Dudley’s childhood and moved through the musical theater tunes he enjoyed as a teen.

“It’s hard to remember how you felt when you were 19, but if you go back to the music, you do,” he said.

He relived the Marine Corps Ball on the University of Georgia’s campus, the year it was integrated but was still an all-white school, and hearing Nat King Cole play.

“Nat King Cole enjoyed talking to college students.

Larkin and I lived in very exciting times,” he said. “I hadn’t thought about that, and hadn’t used those memories in years to make sense out of things.”

Sweeney said the music provided an emotional container for Dudley to do all the work required in his life review.

“I can’t think of anything else that would be as good as music to get you back in touch with your life. When I hear those hymns of my childhood and growing up on a farm, we went to the Baptist church every Sunday morning and every Sunday night and Wednesday night and we sang hymns,” he said.

“About the only connection I have to the early parts of my life are those hymns.”

Gift Of Time just breathing.

The disease has slowed him down. He’s not able to get out as much as he had, but he, his wife, daughter, daughter-in-law and granddaughter spent Christmas together. It was the best ever, he said.

dudley spends most of his energy

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A Gift of Decisions on End of Life

Seeing how his granddaughter is evolving brought him joy.

“There’s a point you reach where you get nervous about what you’ve not done, things you wish to do or not do. I can honestly say that this Christmas, I learned that for the four women in my life, I have little to worry about,” he said.

Dudley said that hospice gave him the time and the tools to realize that.

“I’ve gotten much more out of hospice than I ever anticipated I would get and I really would like to tell physicians and others they really need to start recommending hospice earlier,” he said.

They won’t take you unless you are supposed to be there.

“The benefits of living are incredible if you can get past that you are dying. In a little while I’m going to go upstairs and take a nap. But that’s OK,” Dudley said. “If just a handful of people get to hospice a little earlier, that would be good. I’ve seen people try to make it without it, and that’s not good.”

Editor’s Note ‘ Jack Dudley died in late March 2019.

A socioloigy professor, he ran Virginia Tech’s honors program for 18 years until his retirement in 2008. He said hospice gave him a good final year.

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Photo STEPHANIE KLEIN-DAVIS, THE ROANOKE TIMES

THE GIFT OF SIGHT IS A LIFETIME OF MEMORIES

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