Professor emeritus has last words on death and dying

Professor emeritus Ronald Bayne was one of Canada’s first geriatricians and a lifelong advocate for better care for older adults. Dr. Bayne, shown here receiving his honorary doctorate at McMaster in 2006, died on Friday after deciding to take advantage of the opportunity for medical assistance in dying.

Dr. Ronald Bayne was one of Canada’s first geriatricians and spent much of his long career as a passionate advocate for better care for the elderly, working to solve the problems in long-term care homes.

At 98, and racked with chronic pain, he turned his advocacy to another cause critical to the elderly: planning the end of life.

Bayne, who was a professor emeritus of McMaster University, died on Friday after deciding to take advantage of the opportunity for medical assistance in dying.

Before dying, he shared his story with the media and produced a compelling video urging seniors and their families to take control of the end of their lives.

The 12-minute video is a powerful demonstration of Bayne’s passion for the cause to the very end, part reflection on death and dying, part rallying cry for better health care and autonomy for the elderly.

“I’m 98 so I am near the end of my life. Fortunately, my mind is still clear though my body is exhausted,” he says in the video.

“I want the vast majority of the population, and seniors in particular, to realize that they have far more control at the end than they realize they do. Every Canadian has the right to control their own bodies. There’s no question about it. You are legally entitled, and you must insist that your voice is heard.”

In the video, Bayne is eloquent and passionate, referring to Dr. William Osler and Shakespeare and his long experience in health care.

“I had a long career as a physician and over these many years I’ve been struck by the fact that increasingly people are fearing death and dying. I think it’s become almost universal,” he says. “People themselves have become fearful about what may happen at the end of their lives, and if they’re going to be suffering great pain, if they’ll get relief.

“I want people to get over this fear of the unknown and make it known. Discuss it openly, realizing that death is inevitable.”

He says everyone has the right to end their life if it has become unbearable. “Some people say that’s promoting death. Of course it’s not promoting death. Death is inevitable, you don’t need to promote it. No, this is to reduce suffering and pain. And if you as a person are not likely to pass on soon, you should be able to control your own end of life.”

Trained at McGill University, Bayne was a professor of medicine at McMaster’s Michael G. DeGroote School of Medicine from 1970 until he retired as a professor emeritus in 1989.

He received an honorary degree from McMaster in 2006 for his advocacy and work raising awareness of the need for better care of the elderly and chronically ill people, and his initiation of programs that work to prevent the warehousing of often marginalized populations.

It is clear from the video that his passion for this work continued through the very end of his life.

“We must have our voices heard. That’s what I’m urging people to do in later life,” he says in the video. “Take that responsibility. Let us ensure that the health-care system for long-term care is properly organized and managed and supervised.

“We know, from recent experience with COVID, that these long-term institutions were very poorly managed, and in a way, the general public is justified in their fear of what will happen to seniors in those places,” Bayne says, suggesting the seniors need to realize they have more control than they think they do.

“We as seniors should be working with our families to discuss the end and how we wish it to occur and building up their [family’s] feeling of confidence that it will be peaceful for us and bearable for them. So instead of focusing on the end, build up great memories, happy memories that the family will treasure afterwards.”

Bayne had a close relationship with the university over the years, and 13 of his family members have McMaster degrees, including the honorary degree awarded his son-in-law, Michael Hayes, in 2017.

Bayne and his wife Barbara have made several donations to the university, establishing the Ronald Bayne Gerontology Award for a graduate student conducting aging research; and the Barbara and Ronald Bayne Award to provide support for senior students in the Department of Health, Aging and Society who are engaged in practical learning experience as part of their undergraduate studies.

“Dr. Bayne has been a wonderful teacher for all of us from his days at McMaster helping create geriatrics as its own discipline in Canada, to just before his death,” said Paul O’Byrne, dean and vice-president of the Faculty of Health Sciences. “I am very grateful for all of his lifelong contributions to improving the health of Canadians.”

Parminder Raina, scientific director of the McMaster Institute for Research on Aging, added: “One of Canada’s first geriatricians and a physician at Mac, Dr. Bayne founded the Hamilton-Wentworth Group on Aging, the Gerontology Research Council of Ontario (GRCO) and led the Canadian Association on Gerontology in the ‘80s. His tireless work in the area of geriatrics and gerontology drove the infusion of a lot of provincial funding into research and training in aging at a crucial time.

“His powerful messages around death and dying are inspiring and important.”

Complete Article HERE!

Never say die

By Kristi Nichols

In March, at the beginning of the COVID-19 pandemic, I emailed my oldest son a list of my financial details, a copy of my will, and my advanced medical directive. I thought it was the prudent thing to do in case I contracted the virus and died. Almost instantly, I received his reply: “Is everything alright, Mom?” I had not expected this response and thought it was a good time to have a conversation about death.

As my children were growing up, I made sure to keep the subject of sex in the conversation. I knew that for my children, having sex was inevitable, and there were important discussions to have before it was too late. I wasn’t worried that talking about sex would cause them to have sex; I was more worried that not talking about it might make their lives more difficult. Sometimes it was uncomfortable, but the more we talked, the more approachable the subject became. It’s the same with death. Learning to talk frankly about death and dying takes the burden off everyone. The thought of me, my family members, friends, or anyone dying is uncomfortable, but we need to talk about it.

As the COVID pandemic death toll continues to rise, more people are contemplating their own death, the death of loved ones, and dying in general. Never has there been such a need to talk about death and dying. We have become a society in which talk about death is taboo. We are born, we live, and then we die. We don’t speak openly about this natural series of events; rather we allude to it. The subject has become a source of discomfort. We avoid talking about it directly, just like sex. For some reason, we no longer die. We “pass away.” Why can’t we simply die?

Birth and death used to be a family, community, and religious event. Death was not hidden in a hospital or “care” facility. Discussions about dying and death were not just between a few family members and a medical professional. People were directly and personally involved in caring for dying relatives. Conversations were necessary to plan futures. Death was considered a natural thing and not a forbidden subject. The word “hospice” derives from the Latin word “hospitum,” meaning hospitality or place of rest and protection for the ill and weary. Essentially, going home.

Death as a taboo is taking its toll. When a dying person has not been able to talk about their death, it becomes an unnecessary source of anxiety and depression. These conversations need to be about practical concerns as well as fear, pain, and loss. When final wishes have never been discussed with family members, they are hard-pressed to make decisions at the end of their loved one’s life. Creating living wills and advanced medical directives is a good way to get the conversation started. Once the subject is broached, it may create more opportunities to express emotions and answer questions.

The psychiatrist Irvin Yalom describes four ultimate concerns: death, isolation, loss of freedom, and meaninglessness. These are the most important concerns of the living, and even more concerning for someone approaching the end of life. Why not encourage conversations regarding these deep subjects. What does it mean to those aging or experiencing a fatal illness when the subject of death is taboo? Should they be embarrassed to acknowledge their own mortality? Should they be kept silent about what concerns them most? How can there be dignity and grace in dying when we can’t talk about death?

Our society’s obsession with perfection renders many people unwilling or incapable of dealing with the painful realities of life, especially death. To embrace the human experience means embracing the full spectrum of life’s events, including death. Dealing with mortality can be overwhelming, but approaching death doesn’t have to be arduous. We shouldn’t have to worry about upsetting or protecting others when we need to talk about important things.

I believe the way forward is for us to go back to acknowledging death as what naturally happens at the end of life. We need to revive our conversations about death. It will take courage. It is difficult to face our own mortality and that of those we love. It is always sad and often frightening. Conversations about death remind us that one day, those we care about may no longer be around and maybe, we will die before them. Let’s remember to enjoy and appreciate them now and cherish every moment we spend together! Now is also the time to plan a good death.

If there is one thing I know as a psychotherapist, it’s that talking about our fears eases them. It allows us to be more honest, candid, and at peace. By talking about difficult subjects such as death, you will likely learn that you are not alone and that someone is waiting to have that conversation with you.

Complete Article HERE!

Terminally ill people should be offered choice on assisted dying, says doctors’ group

Clinicians tell committee procedure can be introduced in ‘safe and fair manner’

By Sorcha Pollak, Patsy McGarry

Irish society has a responsibility to offer the choice of medically assisted dying to those suffering with a terminal incurable illness, a network of 100 doctors has said.

In its submission to the Oireachtas justice committee which is considering Dying with Dignity Bill, the Irish Doctors supporting Medical Assistance in Dying (IDsMAiD) group writes that medically assisted dying can be introduced in a “safe and fair manner”. It argues that in cases of terminal illness, “patients deserve to have their choice respected”.

The Bill tabled by People Before Profit TD Gino Kenny, which seeks to legalise assisted dying, passed to committee stage last October after a vote in the Dáil.

Members of the Irish Palliative Medicine Consultants’ Association (IPMCA) have criticised the wording of the bill saying its definition of what constitutes a terminal illness is too broad.

IPMCA chair Dr Feargal Twomey said “the bill as it stands was very open to significant misuse and abuse”.

However, the IDsMAiD submission, signed by 100 doctors across Ireland, states the bill’s criteria for qualifying for assisted dying is appropriately “conservative and restrictive” and that the safeguards proposed are “conservative, balanced and fair”.

Comprehensive regulation, monitoring and reporting of assisted dying must take place if the Bill passes to ensure accountability, transparency and to foster trust in the public, says the group.

However, it argues that the “hypothetical fears” that such legislation would harm Irish society are “insufficient reason to condemn people with terminal illness to unnecessary suffering”.

While palliative care can control and alleviate the symptoms of many patients, it “cannot eliminate all pain and suffering for all patients”, states the submission. “MaiD should be seen as complementing palliative care rather than any attempt to diminish it,” it states.

The group supports the bill’s provisions which state that assisted dying would only apply to competent adults, residents in Ireland and people with a terminal illness that is “progressive and incurable”.

It notes that a person should not qualify for assisted dying on the basis of a mental illness alone and further research is required before this is considered. Legislators should follow Canada and Victoria in Australia by excluding mental illness as qualifying as a terminal illness to “eliminate any doubt or confusion on this issue”, it says.

Access to assisted dying for patients with advanced dementia remains an “evolving issue due to the need for advanced consent”, it adds.

Dr Brendan O’Shea, a Kildare GP who helped draft the submission, says assisted dying will never be relevant to most people who die in Ireland but that for a small number, it is a “vitally important” option. Dr O’Shea, assistant adjuvant professor in public health and primary care at Trinity College Dublin, said the Bill was currently “short on detail” but that he believes all missing elements would be drafted in as the legislation passes through the Oireachtas.

“We feel most strongly that details around regulation need to be discussed,” he said, adding that medical practitioners, scientific experts and the public should be consulted during the process.

Ireland should be guided by evidence from other countries who have had similar legislation in place for years, said Dr O’Shea. The Canadian model is “well-funded, well regulated and conservative in its approach” while the Dutch approach should also be carefully examined, he said.

Dr Brian Kennedy, who was also involved in the submission, says his views were shaped by his time working as a palliative care doctor. “For the vast majority it is enough and most people in most circumstances can reframe to coping with live with their illness. But there are circumstances the patient, family and healthcare workers have to deal with which are simply too terrible for all concerned.”

Dr Kennedy believes offering the choice of assisted dying to terminally ill patients would help with Irish people’s “death anxiety” and is about putting the patient “front and centre”.

In other submissions to the committee, both the Catholic Church and the Presbyterian Church in Ireland have come out strongly against measures in the Bill.

In its submission, the Catholic bishops said the Bill failed “to recognise the reality that many patients who request assisted suicide are depressed and “to require care givers to provide adequate palliative care for the terminally ill person.”

This meant “someone might decide to end his or her own life without ever having experienced what palliative care has to offer and, thus, making this decision without being fully aware of the other options available to them,” they said.

They found it “unsatisfactory” that the Bill “gives more weight to the irreversibility of the condition than to treatments which, even temporarily, relieve the symptoms. This leads to an unacceptably loose understanding of terminal illness.”

In their submission, the Presbyterian Church said the Bill would “leave vulnerable members of our society open to abuse, duress or the weight of a perceived expectation that they will relieve others of the burden of caring for them.”

Former moderator of the church Rev Dr Trevor Morrow, who had been minister at Lucan Presbyterian Church in Co Dublin for 31 years, said “our experience as pastors is that the components that contribute to a peaceful and dignified death are social, emotional, financial and spiritual. By focusing so restrictedly on the physical aspects of dying, this legislation fails to take account of these factors which can help to mitigate, or exacerbate, human suffering and distress”.

Complete Article HERE!

Mac study looks to help families discuss end-of-life care during COVID-19

By Maria Iqbal

Long-term-care staff are so swamped with COVID-19 protocols that end-of-life discussions aren’t occurring with residents and families, says a McMaster University professor.

Sharon Kaasalainen, a professor in the school of nursing, says she’s hearing from families that they’re feeling excluded from decisions about their loved one’s care.

“Compassionate care is missing because it’s all around public health protocols,” she said, noting the absence of these conversations is causing “serous concerns.”

Kaasalainen recently met with the Ontario Long Term Care Association and other long-term-care leaders to raise the issue. The point of compassionate care, she says, is to help people become more comfortable talking about death and supporting families through that process.

Kaasalainen’s research involves helping facilitate conversations about end of life in long-term care. She recently received funding to adapt her research for COVID-19, including by developing online tools to support those discussions. The goal is to help residents, families and staff prepare for decisions at the end of a patient’s life.

While COVID-19 poses major staffing challenges, Kaasalainen says palliative care also has to do with education and a home’s priorities.

Her study will pilot online tools at homes in three provinces. Locally, that includes St. Peter’s Residence at Chedoke on the west Mountain, where she expects to roll out the online resources in spring.

The tools in the study include pamphlets on conditions common to long-term-care residents to help both residents and families learn what to expect as a disease progresses.

Pam Holliday participated in an earlier part of Kaasalainen’s research. She says the tools taught her to ask care providers more specific questions about the health of her elderly mother, a resident at Shalom Village in Westdale.

Holliday says palliative care conversations can help even before a person’s death. In her case, her mother got sick multiple times, but bounced back.

“You try to make them better, but you try to make them enjoy what they have,” Holliday said about the approach.

She adds that the resources are particularly helpful during COVID-19, when there are restrictions on visits to long-term care.

“We’re totally reliant on staff communicating any changes with us,” Holliday said. “It’s (about) asking the right questions.”

Kaasalainen says care conversations can also include the type of music a person would like to hear when they’re dying and which loved ones are with them. But avoiding the discussions affects the quality of care during a patient’s final days and how families cope after a death.

“We’re seeing families very distressed, having to make decisions unprepared, and it leads to poor bereavement,” Kaasalainen said. “They have these lingering feelings of guilt and stress.”

In March, Kaasalainen is also planning to launch a national community of practice with the Canadian Hospice Palliative Care Association. It would bring together researchers, care providers and families in long-term care to discuss palliative care.

Her hope is to see families involved in care decisions feeling better prepared.

“The goal really is good death, peaceful death and families feeling guilt-free and prepared for death when it happens.”

Complete Article HERE!

Ethicist Says Talking About Death Isn’t Morbid

— But More Like The ‘Birds And The Bees’

Headstones in Calvary Cemetery in the Borough of Queens in New York

By and

During a global pandemic, it may be surprising that more people aren’t talking about death and specifically, their final wishes.

Dr. Lydia Dugdale has been seeing this scenario play out over the past year with some of her patients in New York. Dugdale is a medical ethicist and explores the concept that part of living well is “dying well” in her book, “The Lost Art of Dying: Reviving Forgotten Wisdom.”

People spend their entire lives fighting back against death as part of the human condition. Some doctors may fear death, too, but physicians need to talk with patients about their end of life wishes especially during the pandemic, she says.

When patients come in for annual physicals, Dugdale asks if they want to talk about their end of life wishes — and most people say no.

“However, when we get talking, people realize that this is something important, that dying well is very much wrapped up in living well,” she says. “And in order to die well, we have to make some active decisions now while we’re healthy.”

Many people want someone to open the door to this conversation but don’t know how to start it themselves, she says.

The pandemic has raised concerns about ventilators and dying alone in the hospital. One of the biggest obstacles of this challenging time is providing dying people with community and family despite COVID-19 precautions, she says.

In her book, Dugdale shares some forgotten wisdom from the 14th century bubonic plague outbreak. Historians estimate that the “enormously devastating” outbreak killed as many as two-thirds of Western Europeans, she says.

In the 1300s, people approached the possibility of death in some eerily similar ways compared to today.

Some people decided to live large and indulge in hedonism without fretting over the looming possibility of disease and death. This group is comparable to travelers who faced criticism for going on spring break trips early on in the coronavirus pandemic, she says.

Others didn’t leave their house or engage with their community at all during the plague in hopes of earning “divine retribution,” she says. People didn’t know that bacteria caused the plague, but they understood venturing outside could result in getting sick. During the coronavirus pandemic, some people similarly haven’t left their houses at all or only a few times.

The final group of people tries to strike a balance between living life and recognizing the inevitability of death. These individuals continue to engage with society in a wise, prudent way to protect themselves and others, Dugdale says.

“Whether it is plague or pandemic or famine or war, we all are facing our mortality,” she says. “Death has been and always will be 100%.”

“The Lost Art of Dying: Reviving Forgotten Wisdom” by Lydia Dugdale.

Here & Now host Tonya Mosley’s grandmother always taught her that death is a part of life. Dugdale writes that conversations around death should mirror the birds and the bees chat, but she sees generational differences around talking about death in her patients and family members.

Dugdale’s grandfather returned from fighting in World War II and immediately secured cemetery plots. He made ongoing jokes for years about his relationship with the undertaker and threatened to write people out of his will depending on matters such as getting a tattoo he didn’t like, she says.

“But this idea that we need to, just as a matter of practical import, get ready for death is something that really feels like we’ve lost in the younger generations,” she says.

Everyone has a role to play in talking about living and dying well, she says. One common misconception around talking about death is that the conversation should occur close to the end of someone’s life.

People need to prepare to die well when they’re still healthy, she says. For some people that means fulfilling medical wishes such as do-not-resuscitate orders or planning to die at home. If someone wants to die at home surrounded by loved ones, Dugdale says to question if they’re investing in those relationships now.

Death also brings questions about the meaning of life and what happens afterward. Trying to seek answers on your deathbed is difficult, so Dugdale advocates for taking some cues from the Middle Ages.

“We should do this work now,” she says. “And so even engaging these questions of living and dying well — about what life means in the context of our communities over the course of a lifetime — is the best way to work toward a good death.”

Complete Article HERE!

End of life planning

— starting difficult conversations

What do we mean by end of life planning?

End of life planning involves thinking in advance about your preferences and making decisions about the final months of your life. It can include:

  • deciding how you’d like to be cared for
  • thinking about where you’d prefer to die
  • making it clear if there are any treatments you don’t want to receive
  • putting your affairs in order by making a will
  • planning for your funeral.

Once you’ve thought about your wishes, it can help to share them with your close family so they’re aware of your preferences. However these conversations can bring about a range of emotions and starting them in the first place can be a real challenge. Here are some suggestions to help you begin the conversation around end of life planning with your loved ones.

Decide what you want to say

Take a bit of time to think about your wishes and exactly what you want to tell your loved ones. You might want to talk about the type of care you’d like to receive and any treatments you’d prefer not to be given. If you feel comfortable, you may want to let them know your preferences about where you’d like to die. As well as your future care, you may also want to talk about your funeral wishes and what you’d like to happen to your possessions. Make some notes on what you’d like to talk about – think about the things that matter to you most.

Choose the right time to talk

Have the conversation when you know what you’d like to say and, most importantly, when it feels right for you. You may want to let your family member or friend know in advance that you’d like to talk about end of life planning so it doesn’t come as too much of a shock for them when you bring it up.

If you’re not ready to have a face-to-face conversation yet, that’s completely okay too. Perhaps you could try expressing how you feel and the things you’d like to talk about in a letter or recording something on your phone instead.

Find the right setting

Have a think about where you’d feel most comfortable having the conversation. You’ll probably want somewhere that’s quiet and private, and somewhere you won’t be interrupted. That might be at your home or maybe while you’re out for a walk. Choose a place where you’ll feel most relaxed and at ease.

Start the conversation

Starting the conversation can be really difficult. You might want to plan how you’re going to bring up the topic and have some phrases ready in your mind. You might want to open with a question, “Have you thought much about…?” or perhaps a statement, “I know it’s a hard conversation to have, but I’d like to talk about…”. Having these phrases ready can help you feel more comfortable getting the conversation started. Try not to worry about saying the wrong thing; there’s no right or wrong way to deal with difficult conversations; the most important thing is you’ve been brave enough to start it.

Take your time

Don’t feel like you have to cover everything in that one conversation. Spread it out into a few conversations over time. Talking about dying can be emotionally draining both for you and your loved ones, so break the conversations down into small chunks and take your time.

Prepare for different reactions

Everyone will respond to conversations about death differently. Some people will find it easier to talk about than others. Try to be respectful of people’s reactions, keep calm and show you understand. If the person you’re talking to is finding the conversation difficult, then you can always say, “Let’s stop talking about this for now and come back to it another time.”

Talk to your GP

It can be helpful to talk to your GP, or another health professional involved in your care, about end of life planning. They can make you more aware of the options available to you. Let your GP know in advance that this is what you’d like to discuss. You could book a double appointment so the conversation doesn’t feel rushed.

There isn’t a right or wrong way to have a conversation about your end of life care. It’s difficult to talk about dying. It’s not something any of us necessarily want to be reminded about. But it’s important to make your wishes known to those closest to you so they’re aware of your plans and you have some peace of mind.

Complete Article HERE!

Dying at Home May Improve Patient Satisfaction Surrounding End-of-Life Care

By

  • Dying in the home can lead to greater satisfaction of end-of-life care, according to research.
  • Patients’ preferences around death should be respected when discussing palliative care options.
  • Dying in the home can not only benefit patients and their families, but can also reduce healthcare costs.

Older adults who die in their home are more satisfied with their end-of-life care than those who die in hospital settings, a new study has found.1

Researchers out of Johns Hopkins University analyzed data from the National Health and Aging Trends Study (NHATS) of Medicare beneficiaries with and without cognitive impairment who died at 65 or older to see if place of death affected their satisfaction of end-of-life care. The team found that the most common place of death for seniors with cognitive impairment was in the home. People without cognitive impairment were equally as likely to die at home or in the hospital.

Based on the seniors’ “last month of life” interviews, researchers found that participants were more satisfied with the end-of-life care they received when they died at home.

“Many people ‘bond’ with their home, which is known as place attachment,” Natalie G. Regier, PhD, an assistant professor at Johns Hopkins University School of Nursing and the study’s lead author, tells Verywell.

“Human beings, even ones who live alone, can actually experience a reciprocal emotional relationship with a place, meaning there is interaction with and investment in that environment.”

Why Dying at Home Can Lead to Improved End-of-Life Care

While Regier’s study was a secondary data analysis—meaning she was unable to do a deep dive into specific reasons behind satisfaction ratings—she says there are some hypotheses as to why people reported higher satisfaction ratings when they receive care at home.

Based on her own research and many other studies, people experience a comfort in being in their own home, “particularly during vulnerable and uncertain time periods such as coping with an illness.” For people with moderate to severe dementia or cognitive impairment, hospitalizations can be traumatic, she explains.

“The unfamiliar and often chaotic hospital environment can lead to anxiety, confusion, and disorientation for this population, and is associated with poorer end-of-life outcomes,” Regier says. “Furthermore, hospitals are usually not tailored for meeting the needs of people with dementia.”

Even for people without cognitive impairment, there are various reasons why palliative patients prefer to die at home, says Susan Enguídanos, PhD, an associate professor of gerontology at the University of Southern California. Enguidanos has researched home-based palliative care and has found that patients who receive in-home treatment report greater satisfaction with care than hospital patients.

She says while higher satisfaction rates may not specifically be tied to dying itself, it likely has to do with the type of health care they receive in the home, including nurses, social workers, doctors and chaplains. It’s also often preferable to be surrounded by family in the home rather than a more sterile environment, like a hospital, that lacks the same privacy and comfort.

Enguídanos points to a study that shows cancer patients who died at home had less physical and emotional distress and better quality of life at end of life compared with those dying in the hospital. The study also found that ICU or hospital deaths were associated with an increased risk of mental health distress for caregivers.2

Reduced Cost of Care

Aside from the emotional and mental benefit, people who received home care were less likely to visit the emergency department, resulting in lower costs to the health care system, according to one of Enguidanos’ studies.3

“Our hypothesis is that because they received more and regular care in the home, plus their caregivers received training in how to manage their symptoms [and] they had access to a nurse (and doctor if needed) 24/7, they had improved management and therefore had less need for emergency room visits and subsequent hospitalizations,” Enguidanos tells Verywell.

Need for Patient Planning Around End-of-Life Care

Based on research, it’s clear that patients’ preferences and feelings around end-of-life care can have a significant impact on the quality of their last days. Regier and her colleagues’ findings indicate that discussions of end-of-life care planning can help inform palliative policy and “facilitate greater well‐being at end‐of‐life.”

For patients with dementia, Regier says these end-of-life care conversations should happen as soon as possible. Preferably prior to the onset of dementia, or before dementia or other illnesses have progressed to more advanced stages.

“Conversations about goals of care help to guide the treatment approach, keep the lines of communication open, and make sure everyone is on the same page regarding what constitutes optimum care for the patient,” Regier explains.

What This Means For You

Patients should be involved in their end-of-life care planning, as research shows preference around care can have a significant impact on their well-being.

Enguidanos echoes this stance, and says that given the evidence of improved patient outcomes for home-based palliative care and lower medical costs, it makes sense to support this model of care should a patient desire it.

“I do believe we need to transform our payment structures to better support this type of care,” Enguidanos says. “Currently, there is no widespread payment structure to support home-based palliative care; in other words, Medicare does not pay for this care.”

>Regier says end-of-life planning needs to include more than just medical information or certain aspects of advance care planning, like preference for life-sustaining measures. This is because “patient preference for the actual place of death is often overlooked.”

This is especially true for seniors with cognitive impairment, she says.

“Research shows that very few people with dementia who are at end-of-life are treated with palliative care, despite the many benefits of this approach (e.g., decreased behavioral symptoms, decreased pain),” Regier says.

“There needs to be greater awareness among providers and families that a palliative and hospice care are wholly appropriate and beneficial for people living with dementia and not just the cognitively healthy.”

  1. Regier NG, Cotte VT, Hansen BR, Taylor JL, Wright RJ. Place of death for persons with and without cognitive impairment in the United States. Journal of the American Geriatric Society. 2021 Jan. doi.org/10.1111/jgs.16979
  2. Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson HG. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. Journal of Clinical Oncology. 2010 Oct;10;28(29):4457-64. doi:10.1200/JCO.2009.26.3863
  3. Brumley R, Enguidanos S, Cherin D. Effectiveness of a home-based palliative care program for end-of-life. Journal of Palliative Medicine. 2003 Oct;715-724. doi:10.1089/109662103322515220

Complete Article HERE!