July 2017 www.homeandlongtermcare.ca
The role of the
pharmacist in senior care See page 14
What we say has the power to
harm or heal By Jim Mann
WORDS MATTER. Take the word “patient,” for example. My dictionary tells me patients are “people receiving medical treatment.” It is a word used in the context of hospitals and doctor’s offices. When I am in those places receiving treatment, I am a patient. When I am elsewhere, living my life, I am a husband, a friend, a retired communications professional, a 68-year-old man from Surrey, B.C.
I’m also a person living with Alzheimer’s disease. You see now where I’m going with this, right? I can be patient with my own cognitive issues, but I am definitely not a patient. Since my diagnosis in 2007, I’ve become a bit of a stickler for the responsible use of words. I’ve discovered that when we talk about dementia, too often we medicalize it. We put the condition before the person. Try this out: “Jim suffers from dementia.” Maybe you see me as a victim now. Probably you don’t see me at all; probably, you just see my disease. But here is the thing: I am not “suffering” from dementia. My mother didn’t “suffer” from dementia, either. She lived with it, and now I’m living with it, too. Now try this: “Jim lives with dementia.” How does this make you feel about me? Maybe you can see me now as a person first. Maybe my diagnosis no longer defines me. So you see, words affect attitude – the way we think about things and deal with them. When we are careless with our language, we can end up isolating and disempowering the very people we are trying to help. Continued on page 5
Left: Retiree Jim Mann 2
Home & LongTerm CARE | July 2017
contents July 2017
14 Caregiving strengths
2 4 18
Cover story: The role of the Pharmacist in senior care
Power of words Editorâ€™s Note Assisted-dying legislation
Support for caregivers
Editor’s Note 610 Applewood Crescent, Suite 401 Vaughan Ontario L4K 0E3 905.532.2600 www.homeandlongtermcare.ca
GONE ARE THE DAYS of pharmacists simply filling prescriptions. Many pharmacists are now an integral part of healthcare teams. When my grandfather was seeing several different doctors and being prescribed several medications, it was his pharmacist that noticed a contra-indication with one of his medications. It was his pharmacist who notified the doctor, who then conducted a medication review and found that several of the medications he was on could be doing more harm than good. Following the review and a reduction in medications, my grandfather’s energy and mobility improved dramatically. All thanks to a pharmacist. This month’s cover story highlights the role of the pharmacist in senior care and how caregivers can make the most of them as a valuable member of the care team. In this issue you will also find information on ensuring summer venues are accessible for your loved one, as well a piece to help you find your strengths as a caregiver. Please keep sending your story ideas to firstname.lastname@example.org
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Home and Long Term Care is published for consumers who are supporting and/ or involved in home care or long term care. It is available free of charge from distribution racks in hospitals across Ontario. The statements, opinions and viewpoints made or expressed by the writers do not necessarily represent the opinions and views of Home and Long Term Care, or the publishers. Home and Long Term Care and Members of the Advisory Board assume no responsibility or liability for claims, statements, opinions or views, written or reported by its contributing writers, including product or service information that is advertised. Changes of address, notices, subscription orders and undeliverable address notifications, and inquiries can be sent to: firstname.lastname@example.org Subscription rates in Canada for single copies is $35.00 per year.
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I’ve discovered that when we talk about dementia, too often we medicalize it. We put the condition before the person.
The power to harm or heal Continued from page 2 I’m a chatty guy. Heck, sometimes you can’t shut me up. When I travel, I will often strike up a conversation with my seatmate on the plane or the train. But when I tell them I have Alzheimer’s disease, usually that is the end of the conversation. It’s a shame because I’m OK talking about my illness. Occasionally, my seatmate will challenge me – they’ll say “You can’t have Alzheimer’s disease! We’re talking, after all.” Of course, I have good memory days and bad memory days. But please, don’t judge me based on my illness. Talk to me, get to know me. We might even become friends. That’s a word I’m comfortable with. LC Jim Mann is an advocate, volunteer, spokesperson and person living with Alzheimer’s disease.
Resources 564,000 Canadians are currently living with dementia 937,000 The number of Canadians who will be living with the disease in 15 years 1.1 million The number of Canadians affected directly or indirectly by the disease $10.4 billion The annual cost to Canadians to care for those living with dementia The Alzheimer Society of Canada
July 2017 | Home & LongTerm CARE 5
strengths as a caregiver? What are your
By Natalie Strouth
Are you aware of your individual caregiver strengths? What about your internal resources? What is your greatest strength as a family caregiver?
Home & LongTerm CARE | July 2017
IT IS EXTREMELY IMPORTANT for you to be able to identify your caregiver strengths and then draw on them to shape your caregiving. Family caregivers can sometimes feel “swallowed up” by the ongoing demands of the caregiving role and caregiver responsibilities. With reflection and focus on the strengths and capabilities you bring to this role, you can: • Take greater control over your experiences • Feel more competent • Enhance your well-being • And ultimately, be a happier person What are your caregiver strengths? Discovering your own strengths may initially be a difficult undertaking because you may have been very focused on the person you have been caring for and haven’t turned your attention inward. Identifying and being aware of your caregiver strengths will serve both you and the person you’re
caring for. Once you recognize the internal resources you already have, you can develop an action plan to utilize these resources to counteract difficulties and challenges you face in the context of caregiving. Finally, think about personal strengths in the broadest of ways. That is, any inner quality that assists you in dealing with the challenges of life – any inner quality that assists you – is a personal strength. In this way, you may discover hidden caregiver strengths or internal resources of which you had been previously unaware. French novelist Marcel Proust said, “The only real voyage of discovery consists not in seeking new landscapes but in having new eyes.” You will notice that these traits or strengths are not necessarily unique to caregiving. However, they are certainly applicable to the caregiving experience. The following list has been developed through a broad search and a review of the caregiving experience. Continued on page 8
Natalie Strouth is a Caregiver Support Program Manager at St. Elizabeth Healthcare. This article originally appeared on elizz.com and is reprinted with permission.
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What are your strengths as a caregiver? Continued from page 7
Caregiver Strengths 1. Resilience – The ability to withstand or recover quickly from difficult conditions; I can negotiate for what I need and navigate systems. 2. Patience – The capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset. 3. Flexibility – Ready and able to change so as to adapt to different circumstances; accept what is happening in the moment. 4. Compassion – The ability to translate empathic feelings into action (desire to alleviate suffering). 5. Optimism – Expect a favourable or positive outcome. 6. Confidence – Sure of one’s self and one’s abilities. 7. Organization – Methodical and efficient in arrangement or function. 8. Ability to Laugh – To easily see and appreciate the humour in the situation. What are your personal strengths? How many of these traits do you possess? Can you think of more strengths that aren’t on this list?
Caregiver Strengths Exercise #1 To identify and acknowledge your personal caregiver strengths, set aside a few minutes for personal reflection. Ask yourself the following questions:
• What gives me energy? • What am I good at? What do I do best? What do I do well? • What am I naturally good at? What comes naturally to me? • What are my best character traits? • What things do I look forward to doing? • When faced with challenges or adversity, what strengths do I bring to these challenges? • What do I handle well? This is no time for false humility. Do not censor or judge yourself. This is a time for honest reflection on what you do well. It may be an activity, a character trait, a situation, or some combination of all of these. If you find it difficult to assess your caregiver strengths, ask your best friend or someone who knows you well to answer these questions about you. In the context of your work life, what would others say are your strengths? If you were applying for a job today, what would you identify as your strengths (you know they are going to ask you this question!).
Caregiver Strengths Exercise #2 The following statements will help you focus in on your strengths as a family caregiver. Your task is to decide the strength of your agreement with each statement, using the following scale: 1. All the time 2. Sometimes 3. Hardly ever There are no “right” or “wrong” answers. Select the number that most closely reflects you. Take your time and consider each statement carefully. I see myself as someone who is… 1. Resilient (All the Time, Sometimes, or Hardly Ever – Record your rating) 2. Patient 3. Flexible 4. Compassionate 5. Optimistic 6. Confident
Home & LongTerm CARE | July 2017
7. Organized 8. Able to laugh easily/see the humour in the situation
Harnessing your caregiver strengths Now that you have identified and acknowledged your personal caregiver strengths you can decide to consciously approach your caregiving by harnessing these strengths and applying them to your family caregiving experiences and activities. Conversely, what has likely emerged is a conscious understanding of what your greatest challenges are and where you are not at your best. It is equally important to have this awareness because you can develop a caregiver action plan to manage these challenges. Try to limit them to the bare minimum, delegate them to someone else for whom they are strengths, and/or make a decision and plan to nurture and enhance your challenges. In the field of positive psychology, recent research supports that it is entirely possible to cultivate or
further develop traits or personal strengths and it is also possible to strengthen so-called weaknesses. In other words, it is possible for all of us to change how we approach life’s experiences and challenges.
How are you going to harness your caregiver strengths? Look at your list of personal strengths. • How can you draw upon and really leverage your strengths more as a family caregiver? • If possible, can you change anything in your caregiving situation to work more with your strengths? • Can you delegate tasks that don’t align with your strengths? • On the other hand, are there opportunities for you to work on and strengthen any weaknesses? • Is there a trait that really matters to you? Is this an opportunity to set an intention for yourself for the next week? Identify one goal to either leverage a strength more or to further develop and overcome a weakness. Observe any changes that occur when you intentionally put your caregiver strengths into action. LC
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Event and venue
accessibility checklist By Kate Grainger
SUMMER IS A BUSY time for outdoor events such as festivals, markets, and concerts. For family caregivers and the people they care for, these events can be a great opportunity to get outside and spend a fun day out in the community. However, accessibility at events can sometimes be limited. Unless you’ve been to a particular venue in the past, it can be hard to know the level of venue accessibility before you get there. Accessibility at events, especially in a park or unpaved venue, can present challenges to caregivers and the people they care for, especially if they have any challenges with mobility. With the introduction of provincial legislation surrounding accessibility requirements for venues and parks across Canada, there has been an increased focus on making accessibility an important consideration. If you are a caregiver and you’re planning on attending an outdoor event with the person in your care during the summer, there are a number of accommodations you’ll want to consider ahead of time. It’s helpful to know the level of venue accessibility
before attending so that you’re not surprised or disappointed when you get there.
Venue accessibility checklist Accessible parking: This is one of the first things to consider when you are assessing the accessibility of the venue. Adequate accessible parking that is close to the entrance, and has an unobstructed path into the venue helps to ease the stress of your arrival. Accessible walkways: As you make your way into and around the venue or event you’ll also want to ensure there are clear, wide walkways, preferably ones that are paved for wheelchair access. This is especially necessary if the person you care for uses a mobility aid, such as a wheelchair, walker, or cane. Look out for tripping hazards that could be left on the walkway. Things like wires, curbs, potholes, or even loose trash could be a potential tripping hazard. Seating and access to attractions: The whole point of taking the person in your care to the venue is to enjoy the event whether that is a festival, market, concert, or just a day in the park. In order to enjoy your day the venue should have accessible seating that provides access to the attractions.
Kate Grainger is a writer for Elizz.com. This article is reprinted with permission.
Home & LongTerm CARE | July 2017
and the person in your care can get out and enjoy events together. Unless youâ€™ve been to a particular venue in the past, it can be hard to know the level of venue accessibility before you get there. In some cases you may be able to find contact information online that will connect you to the event planner. They will be able to answer your questions, and give you a good idea of what to expect in terms of accessibility. In addition, many venues now have a lot of their accessibility features listed on their websites. As a caregiver, youâ€™re often more aware of the variety of accessibility needs.
This may include designated seating areas or the placement of ramps throughout the venue in order to allow all guests, including those with mobility challenges, access to different areas of the venue. Accessible washrooms: Accessible washrooms should have dedicated accessible toilet stalls that are large enough to accommodate mobility aids such as a wheelchair or a caregiver. It should also feature grab bars, and an accessible-height sink. Washrooms should be conveniently located throughout the venue, and easy to find. Signage (Braille, Sign Language, Audio): Depending on the unique needs of the person in your care, signage that is large enough to read and possibly offered in various accessible formats can help the person in your care participate in the event. This may be a challenge for an outdoor venue, especially one that is temporary.
Disability access and inclusion Depending on the type and location of an outdoor event or venue, there can be a wide range of varying disability and access inclusion features available. There will always be some venues and outdoor events that are more easily accessible than others, but itâ€™s worth looking into ahead of time so that you
Accessibility is more than just providing a wheelchair ramp. The person youâ€™re caring for could have difficulty hearing or seeing, mobility issues, or even diagnosed with an â€œinvisible disabilityâ€? (a condition that is not always obvious to others but impairs some aspect of their life). All of these conditions require diligence to ensure both of you have an enjoyable time at an event. LC
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Why we don’t need a ‘Caregiver Recognition Day’ Organizations advocating for family caregivers are applauding the Prime Minister’s recent statement in recognition of family caregivers on National Carers Day. I’m less celebratory. Here’s why. By Laura Funk
IN MANITOBA, ‘Caregiver Recognition Day’ is already enshrined in legislation. Groups in Alberta, Newfoundland and Labrador, and Quebec have advocated similar recognition days or weeks to promote public awareness. Of course, we all need to be aware of the significant contributions family caregivers make to society – after all, they are sizeable. In 2012, eight million Canadians provided care, and 2.2 million Canadians received that care in their own homes – most often from family. In 2009, the estimated dollar value of family care was more than $25 billion.
We need front-line supports and services 12
Home & LongTerm CARE | July 2017
For many, caregiving is all day, every day, 365 days a year – and their work is often invisible to others. So it is important carers feel their contributions are valued, in particular, in their interactions with health care professionals, their employers and other family members. But in my years of research with family caregivers, including leading a provincial consultation with 400 caregivers, something has become clear to me. Although family members do not want their care work to be taken for granted, some are uncomfortable, even disconcerted, by being recognized with a special caregiver’s day.
Caregivers can view recognition as a trivial concern relative to the care recipient’s need for services. In this respect, a recognition day is unhelpful. Many caregivers view what they do as a natural part of family relationships. They don’t do it for personal benefit or with the expectation of appreciation. I noticed a similar phenomenon when I spoke with a nursing home volunteer who, for this same reason, refused to attend a volunteer recognition event. My research also suggests there may be some carers for whom praise such as, “You’re doing a great job,” or “You’re a wonderful daughter” can actually invoke guilt or ambivalence. Why guilt? Because caring is a complex emotional experience, often connected to our identity and self-worth. When we confuse ‘caring for’ with ‘caring about,’ guilt can result. What happens, for example, when caregivers can no longer manage and they face difficult decisions about institutionalization for their loved one? Lastly, caregivers can view recognition as a trivial concern relative to the care recipient’s need for services. In this respect, a recognition day is unhelpful. So what do caregivers want? What caregivers need are accessible services for the person they are caring for, when they need them. Caregivers have told me they want access to services for themselves and the care recipient, not a pat on the back. This is the true meaning of recognition.
The recently tabled federal budget announced a new caregiver benefit, offering up to 15 weeks of assistance to help eligible Canadians caring for critically ill or injured family members. This is a welcome measure – and a good start. However, being able to access sufficient, quality health care services, such as home care for the loved one being cared for, is also important. The federal budget promises increased funding to the provinces for home care. Let’s hope that funding finds its way to actual services for patients – and soon. Carers Canada emphasizes moving “beyond recognition” to improve access not only to caregiver support services but also patient care resources. This is what our governments must do if they truly want to support caregiving in Canada. This does not mean that when formal services are provided, family carers ‘do less’ – instead, they can focus on different aspects of care and are then better able to preserve their own sense of well-being. Caregivers could then also be less frustrated by having to ‘fight’ against an impermeable system to access help for their family member. To my knowledge, no research exists that indicates any long-term effect of a caregiver recognition day on carer burden or well-being.
Truly being aware of caregiver contributions and needs means being aware of the crucial importance of formal health care supports and policies. Our governments could do much more in this regard.
I am also somewhat personally suspicious of the rhetoric of carer acknowledgement, since it can be used politically to imply that governments themselves should not be responsible for the provision of care – justifying further erosion of publicly funded services.
Caregiver concerns are supported by existing evidence. Some research emphasizes the benefits of services and policies targeting carers directly, such as work accommodation and income assistance.
Truly recognizing carers means providing helpful, supportive, long-term health and social care services for those who need them – as well as for their careers. LC
Laura Funk is an expert advisor with EvidenceNetwork.ca, an Associate Professor of Sociology at the University of Manitoba who has studied issues of aging, unpaid and paid care work and health for over 18 years. Some of her current research focuses on how family carers living in Winnipeg, Manitoba navigate health and social care systems.
July 2017 | Home & LongTerm CARE 13
The role of the
pharmacist in senior care By Susan C. Jenkins
SENIORS MAKE UP ABOUT 12 PER CENT of the Canadian population, but they receive between 28 and 40 per cent of all prescribed medications. About two-thirds of seniors take five or more prescription drugs each year, and a quarter take ten or more. Because seniors are likely to be taking multiple medications and because aging changes the way our bodies respond to the drugs we take, there is a potential for serious medication problems in older people.
As the medication experts on the healthcare team, pharmacists are perfectly positioned to work with patients, their doctors, and their caregivers to prevent medication problems and help people manage their health and get the most benefit from their medicines. As Varsha Patel, a clinical consultant pharmacist with Medical Pharmacies Group Limited, explains: â€œWe identify areas of potential risk, evaluate the situation, and work with patients, caregivers, and other members of the healthcare team to
Susan C. Jenkins is a freelance writer and editor specializing in medicine, pharmacy, and healthcare. She can be reached at firstname.lastname@example.org.
Home & LongTerm CARE | July 2017
resolve any problems. We also practice the fine art of deprescribing – we assess patients’ drug therapy and look for medications that may no longer be of benefit and evaluate how best to simplify the treatment plan while maintaining quality of life.” Some people mistakenly think that all pharmacists do is transfer medicines from large bottles into small bottles and put a label on them. The truth is that they do so much more. Did you know that pharmacists provide these important services? ble • Monitoring prescriptions for possible n drug interactions: If you see more than one doctor – for example, a family phy-sician and one or more specialists – thee drug one doctor prescribes may interactt or. with a drug prescribed by another doctor. Pharmacists check for possible interactions actions before they fill a new prescription. • Telling you about your medicines: It is important to know what each medicine is supposed to do, what possible side effects to watch out for, and what to do if they occur.
Varsha Patel’s tips • Don’t stop taking a medication without checking with your doctor or pharmacist first. Some medicines should not be stopped suddenly and must be tapered off. • Know what to do if you miss a dose. Don’t just double up when your next dose is due. Each medicine is different. Your pharmacist can ca tell you how to handle a missed dose. do • Never take a medication that was w prescribed for someone else or share s your medicines with anyone. Different D conditions can cause the same sam symptoms, and taking the wrong medicine di i can make the situation worse. • If you have any questions about your medicines or about medicines prescribed for someone in your care, talk to your pharmacist.
• Explaining how to take your medications properly: Some drugs need to be taken on an empty stomach; others must be taken with food. Some foods and beverages can interfere with how certain drugs work. Some tablets shouldn’t be split or crushed. You also have to be careful with nonprescription drugs and herbal supplements. Don’t assume that because something is “natural” that it’s “safe” – poison ivy and toadstools are “natural” but certainly not safe. Pharmacists can help with all of this. • Adapting packaging to your needs: Pharmacists can put your medicines in easy-to-open containers and use larger labels that are easier to read. They can also package your medicines in individual doses to make it easier to keep track of what to take and when to take it. • Changing the flavour of a medicine: Some liquid medicines taste bad, and that can make someone reluctant to take them. In some cases, a pharmacist can change the taste of a drug to reduce the likelihood that someone will skip a dose. LC July 2017 | Home & LongTerm CARE 15
Caregiver SOS Crucial not to overlook
oral health in seniors A dental visit is important to evaluate the gums, teeth and soft tissues and to ensure other health issues are detected. Dad, who has had several small strokes, seems to need a lot of help with many things. I noticed he doesn’t brush his teeth much and they look neglected. Should I bother with this or let them be? Signed, Teeth care or not?
Oral health is an important part of all our overall health needs and if not properly maintained, can end up causing a lot of pain and discomfort and affect our speaking ability, chewing, swallowing and digestion. These problems can arise from certain medical conditions or from age-related changes. Oral health can also impact your dad’s nutrition, interpersonal relationships and sense of self-esteem. A person with missing teeth, ill-fitting dentures, cavities or gum disease may not be able to eat the diet necessary for their well-being. They are usually unable to manage raw vegetables, salads and many fresh fruits. This may result in poor nutritional intake. Many older adults often take a variety of medications. It is not unusual that some of these may have negative effects on teeth and oral health. Medications that treat blood pressure, diabetes
and depression as well as cholesterol can result in reduced saliva production and a dry mouth. This, too, can affect chewing, speaking and swallowing and increases the risk of cavities. A dental visit is important to evaluate the gums, teeth and soft tissues and to ensure that other health issues are detected. It is also helpful to make sure that the dentist can provide instruction on how to handle care at home. It is still critical to have a dental checkup at least once a year. Your dad has had strokes which can also affect his ability to manage his oral needs. Some individuals with strokes, dementia and other cognitive issues have difficulty with “how to use a brush.” This can be due to a condition called “apraxia,” whereby the brain cannot perform or co-ordinate the complex motor components to do the activity, even though the ability to move is present. Other individuals may also not remember to brush regularly since they are forgetful. Putting your hand over dad’s hand and guiding him with the movement may be all that is needed to get him to brush. Sometimes just putting the brush in his hand may help him do this activity more easily, as he will automatically start to use it properly.
Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Centre and in private practice. She is co-author of Dementia: A Caregiver’s Guide, available at baycrest.org/dacg Email questions to caregivingwithnira@ baycrest.org. This article originally appeared in The Star.
Home & LongTerm CARE | July 2017
Some people are resistant at some times of the day, so experiment with another time. Time of day is not as critical as actually doing it. Talk to your dentist about mouth swabs and rinses that can help reduce bacteria. Keeping dentures clean by brushing them well can help limit the risk of infection. Have the dentist check the fit of prostheses, as weight changes can affect fit and comfort and as a result, function. Perform regular mouth checks and see if anything out of the ordinary is noted (e.g. lumps, colour changes or sores.) Make an appointment to check any irregularity you find. Use a soft brush and do the best you can to have dad remove as much plaque and food matter as possible. You can also try brushing with a bowl and brush while seated if that helps. Dr. Bonnie Chandler explains: “If he is not effective in brushing, a caregiver should be brushing and flossing for him. Flossing wands are easier to use than regular floss.
Some cognitively impaired individuals are not able to reliably tell you if they have pain, so a regular checkup with a dentist who understands these issues is key. Although it is yet another caregiver responsibility, taking care of oral health is indeed an investment in your dad’s overall health. LC
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July 2017 | Home & LongTerm CARE 17
Assisted-dying legislation should include advance directives for dementia By Stuart Chambers
The assisted-dying bill (Bill C-14) was passed in Canada almost a year ago, but not without its detractors – on both sides of the issue. OPPONENTS OF THE BILL were concerned that vulnerable populations, such as those with disabilities or mental health issues, might opt for this extreme measure as a result of inadequate or non-existent health and social supports. Proponents of assisted dying, on the other hand, felt the law did not go far enough because it is limited to those whose deaths are ‘reasonably foreseeable,’ thus preventing those with chronic or neurological conditions from having an autonomous choice to end intolerable suffering. Now, a year on, there are lobbying efforts underway to expand the assisted-dying legislation to include advance directives. In the case of dementia, advance directives are the right path forward – from both a legal and ethical perspective. Here’s why.
For starters, opposing viewpoints are often inconsistent. One of the primary claims against advance directives for assisted dying is that they do not protect patients who can no longer make or express decisions for themselves. But patients in various states of unconsciousness – for instance, those who experience severe head trauma or who ingest a fatal overdose of drugs – are already incapable of making end-of-life decisions. Yet, acting as a legal surrogate, the next-of-kin can request termination of a family member’s life-prolonging treatment, often without prior knowledge of the patient’s wishes.
Advance directives are legal documents that allow patients to spell out their wishes concerning end-oflife care. When medical decisions are required, the document helps to avoid confusion about one’s true desires in case of ailing health or incapacity.
Another common critique forwarded by detractors suggests that many doctors might find it difficult to comply with euthanasia requests because the individual who signed the advance directive may be, in many ways, a different person psychologically than the person they are now. Yet, this is precisely why some individuals demand the right to sign advance directives.
Critics reject euthanasia as an option in advance directives specifically for cases involving future dementia. But the grounds for limiting patient choice are problematic for several reasons.
For some, losing the ability to think rationally is an affront to personal dignity. Depending on the condition, the person may not be able to recognize their former self; they may no longer be that person.
Home & LongTerm CARE | July 2017
Biologically speaking, the patient is alive, but in the case of dementia, some may believe one’s “biographical life” is essentially over. Finally, critics often point out that family members may deny a proactive request for euthanasia in cases of dementia because they are uncertain about the patient’s current state of mind or degree of suffering. Yet these same feelings of anxiety already exist in situations where family members must determine when to stop medical interventions. In other words, whether the patient’s life ends by a negative act (withholding nutrition and hydration) or by a positive act (lethal injection), families would experience similar doubts and anxieties. The point of an advance directive is to prevent another’s moral sensibilities or angst from overriding an individual’s preference for euthanasia. Many critics of advance directives agree that constitutional rights to autonomy are important but so is the protection of those who are vulnerable.
These types of divisive arguments – the kind that pit “dangerous” euthanasia advocates against the “defenseless” – are no longer persuasive in a postCarter era. In deciding Carter v. Canada (2012), Justice Lynn Smith found that the claim of “abuse against vulnerable populations” was empirically unsound and that the risks associated with legally permitted assisted death had “not materialized” in the manner that had been predicted. In 2015, the Supreme Court of Canada – in a unanimous decision – agreed with Justice Smith’s findings. In other words, there is no reason to think we can’t strike a balance of rights with safeguards. Advance directives that include euthanasia for future dementia would help make clear, and preserve the right to, a patient’s choice. It would also prohibit governments, hospital authorities or family members from imposing their own version of the good life – or good death – on the patient. LC
Stuart Chambers, Ph.D., is an expert advisor with EvidenceNetwork.ca and teaches a course on death and dying in the Interdisciplinary School of Health Sciences at the University of Ottawa. His dissertation explored the death and dying debate in Canada. email@example.com
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2339 Dufferin Street Toronto, Ontario M6E 4Z5 July 2017 | Home & LongTerm CARE 19
One day the house will be quiet
By Sabrina Skoczylas
WHEN YOU WALK THROUGH THE HOME of Karen Gillespie, it’s clear from the old pictures that adorn the walls that family comes first. The hallways are lined with memories including family portraits of Karen with her husband Jack and her two daughters. There are silly snapshots of holiday celebrations; graduations and a quietly self-assured photo of Jack in a black robe from his days as a lawyer. But look a little closer and you’ll also notice the homemade “I’m walking for my husband Jack sign” hanging off a shelf and framed clippings from the local paper about Karen and Jack’s journey on the challenging road of early onset dementia. Karen’s retirement plans were pushed back when she became Jack’s full-time caregiver after her husband was diagnosed with frontal temporal dementia Karen’s sparkling eyes and cheery disposition conceal what is undoubtedly a physically and emotionally exhausting role: caring for the love of your life as his cognitive and motor abilities gradually slip away. But then the caregiving role is not unfamiliar to her: when her daughter was diagnosed with a severe learning disability, Karen homeschooled her. She also cared for both her in-laws as their health declined. “I thought my caregiving days were over and I was really looking forward to that chapter of life… Until our life changed.” Karen explains referring to Jack’s diagnosis of frontal temporal dementia. 20
Home & LongTerm CARE | July 2017
Instead of travel to far-away places, Karen began modifying their large backyard (known as “Jack’s paradise”) and bought an adapted car that was easier for Jack to get in and out of. “She is always thinking one step ahead of the disease to make the best life possible for my father,” says daughter Meghan, who submitted a winning nomination to VHA Home HealthCare’s 2017 Heart of Home Care Awards – an honour which celebrates unpaid Ontario caregivers who go above and beyond to care for their loved ones. Jack is now left unable to do anything for himself. He can’t get out of bed, he can’t take the covers off if he’s hot, he can’t feed himself, he can’t talk, and his walking is declining. But that doesn’t bring Karen down. She cares for her husband with all her heart and quietly awaits her retirement days. “Instead of feeling sorry for myself, I took a mason jar that was sitting on the counter [to fill with ideas]. When the house is quiet, and the house will be quiet someday, there were lots of things – little things – that I thought ‘I wish I could do this, I wish I could do that that.’ And on those days that I’m feeling weepy and I’ve missed something and my husband is gone, I can just pull something out of this jar and do it.”
Karen Gillespie (right) enjoys a special Heart of Home Care Award luncheon. She and husband Jack were also front page news in their hometown of Welland.
Karen’s Caregiving Tips • Make sure to have time to care for yourself. That could mean different things at different times. • Accept your caregiving journey. Get educated.
Read all about it. Seek help from appropriate societies. Never promise your loved one that they won’t go into long-term care. If it comes up, say that you will always try your best. Many are living with guilt because they promised to keep a loved one at home and they just can’t do it. Your mood and your outlook really affect your loved one. Try to stay optimistic. Don’t talk about your loved one as if he or she is not in the room. Always be flexible. Change as the disease changes. Let expectations go. If you’re frustrated, just think how it must feel for them.
The 2017 Heart of Home Care Awards were generously sponsored by PACE Consulting, Teak Printing, Flashframe Digital Media, BDO Canada, and Home and Long Term Care Magazine. LC Sabrina Skoczylas is a communications coordinator at VHA Home HealthCare.
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Four great reasons to hire a certified
foot care nurse By Melanie Ramos
WHY SHOULD YOU OBTAIN the services of a certified foot care nurse instead of going to a nail salon or spa, or from someone who does foot care on the side and can do the work at a discounted rate? Foot care is an essential service that most people donâ€™t think about until theyâ€™re in a lot of pain and discomfort. To help family caregivers gain a better understanding of the importance of foot care and foot health, Elizz spoke to Ian, a longtime registered nurse who specializes in foot care with Saint Elizabeth, the company that powers Elizz. Ian graduated from nursing school in 1983 and worked for many years in hospitals and as a visiting home care nurse. After taking some time to care for aging parents with cancer, he worked in a coronary care unit until leaving hospital nursing. In 2014, he began community care again in the specialty role of the Foot Care Nurse. In this Elizz article, Ian will share some of his insights about the value of certified foot care nurses.
Why use a certified foot care nurse? Foot care nurses are highly educated and medically trained Foot care nurses are registered nurses (RNs), licensed practical nurses (LPNs)/registered practical nurses (RPNs) and personal support workers (PSWs) that are trained and certified in this practice. The difference is that PSWs are licensed to provide basic foot care while RNs and LPNs/RPNs can provide advanced foot care to their clients.
Home & LongTerm CARE | July 2017
In order to protect the public, all foot care nurses must be certified by their provincial nursing college and a member in good standing. Ian holds a current Certificate of Competence with the College of Nurses of Ontario (CNO), which is a requirement for all nurses in Ontario. To specialize in foot care nursing, Ian also took additional courses specifically related to foot care.
Foot care nurses provide a professional nursing service, not pedicures As a certified foot care nurse in Ontario, Ian has a legal responsibility to report any medical issues he finds to his client and/or family caregiver to ensure that they are aware of the situation and that there is follow-up care.
Nail technicians and spa workers have undeclared amounts of training for the work that they do but unless the person is an RN, an LPN/RPN, or a trained PSW, they are not health care professionals or, in the case of a PSW, a health care worker, nor do they have any professional college that would hold them to any standard of practice. Basically, they are not trained to recognize or care for a health problem or provide health teaching to the client. And, because not all provinces require nail technicians to be licensed, consumers may be seeing someone who is not up to speed on all of the latest safety and foot care best practice guidelines. Certified foot care nurses are trained to do the following services: • Callous removal and/or corn removal • Trim toenails for clients who may have complications that make it unsafe or impossible for them to do it themselves (for example: nerve damage due to diabetes, dementia, arthritis, etc.) • Provide education for clients and caregivers regarding ongoing foot care, selecting proper-fitting shoes, etc. • Spot potential issues and take appropriate action before infection sets in or the pain gets worse
Certified foot care nurses have the right tools for the job When asked why only certified foot care nurses can provide foot care, Ian explains that they have the proper foot care tools on-hand to do the job of caring for feet (including foot care for seniors). When he’s on the job, Ian has nine sets of foot care tools that he relies on. Each tool set includes: • Foot file • Corn remover (which Ian points out isn’t a tool he ever uses as it can cause more injury) • Two nail files • Blacks file, which is used to sand down nail edges to trim involuted nails and help to prevent ingrown toenails • Cutting pliers • Nipper • Scissors • Regular nail clippers In addition, he also uses a Dremel power tool and sanding bits for mycotic toenail treatment. According to Ian, regular toenail clippers aren’t strong enough to cut through thickened toenails that have succumbed to fungus. The only option to trimming mycotic toenails is to sand them down. These foot care tools are not normally part of hospital or clinic supply carts, and regular nurses don’t carry them around in their kits. As a certified foot care nurse, Ian has invested in tools of the trade that are made with high quality German steel and are backed by lifetime warranties to ensure that his clients receive the best foot care possible. If the person in your care has foot care issues, it’s worth having the matter assessed and cared for by someone who not only has the skills, training, and equipment to do the job properly, but also has your best interests (and those of the person in your care) in mind. Call Elizz toll free at 1-855-275-3549 to inquire about our foot care services for you or for the person you are caring for. LC Melanie Ramos is an Elizz Editor. This article is reprinted from elizz.com with permission.
July 2017 | Home & LongTerm CARE 23