Is Dying at Home Overrated?

A palliative care physician struggles with the complex realities of dying at home, and the unintended consequences of making it a societal priority.

By Richard Leiter, M.D.

“If time were short, where would you want to be?”

As a palliative care physician, I regularly ask my patients, or their family members, where they want to die. The specific language I use depends on what they know, what they want to know and how they process information, but the basic premise is the same. Having asked this of hundreds of patients, I have come to expect most will tell me that they want to be at home.

But recently I have struggled with the complex realities of dying at home, and the unintended consequences of our making it a societal priority.

It is emotionally and intellectually compelling that patients should die in their own homes, surrounded by loved ones in a comfortable, familiar environment. For patients dying of end-stage disease, be it cancer, heart disease or something else, even the best hospitals are unlikely to be able to “fix” the underlying problem. We worry that people will go through expensive and potentially painful tests and interventions that have little chance of changing the ultimate outcome. And the opportunity costs are high; time waiting for a scan or procedure could be spent getting financial affairs in order or saying goodbye.

While there are still those who subscribe to the idea that excellent health care demands doing everything possible to prolong a life, many doctors and patients now prefer a less intensive approach when time is short. Rates of hospice enrollment have increased and the home has re-emerged as a place to die, not only preferred by patients and families but also heavily recommended by clinicians, especially in my field.

The system is imperfect, though. Unless a family has the significant resources necessary to hire aides or nurses, informal caregivers become responsible for nearly everything — from feeding to bathing to toileting. These tasks often get harder as the dying person weakens. In my experience, most family members want to care for their loved ones at home, but many are unaware of caregiving’s physical and emotional toll. And the length of time a patient spends in hospice care is difficult to predict, sometimes requiring caregivers to take significant time away from work or other family members.

Complicating matters, I frequently detect ambivalence in patients who tell me they want to die at home. Some are comforted by the reliability of the nursing care and easier accessibility of IV medications in the hospital. For others, dying at home may not be their top priority. Parents may want to protect their young children’s physical space from death. Similarly, one patient’s wife told me through tears that their adult son had died suddenly in their home a few years earlier; she could not bear the thought of watching her husband die in the same place.

We should not be surprised, then, that some patients who do enroll in hospice end up back in the hospital. And yet we in palliative care often view these cases as failures. We wonder what the critical gap was that led the family to call 911 or come to the emergency department. Was the patient’s pain uncontrolled? Were medications unavailable? Did the family panic? Something must have gone wrong.

I wonder, though, if we’ve adopted the wrong approach. As a doctor who regularly asks my patients where they “want” to die, I often worry about what this will look like if they choose home. I am concerned about the unacknowledged caregiving burden for families and friends. In addition, many people with advanced disease experience escalating symptoms, like pain or shortness of breath, that even the best hospices have difficulty managing in the home. In these situations, I am caught between the passionate rhetoric of my field, the spoken and unspoken wishes of my patients, and my clinical judgment. The patient in front of me always takes precedence, but my cognitive dissonance is difficult to escape.

To be sure, dying in the hospital has its own trade-offs. Though we can make more, and faster, medication adjustments, severe symptoms can be difficult to treat regardless of the setting. And as much as we try, it’s nearly impossible to alter the health care system’s usual rhythms. Overflowing hospitals often lack the flexibility to give dying patients the privacy of a single room. We cannot guarantee that they will not be woken up by the squeal of a malfunctioning IV pump or the chaos of clinicians scrambling to help another patient. Family and friends may live hundreds of miles away, preventing them from being with their loved ones at critical moments. While an inpatient hospice facility, which represents a third option, can provide hospital-level care in more of a homelike environment, Medicare and other insurance providers have set a high threshold for the few available beds. Most patients are only eligible if they are in the last few days of life or have severe, uncontrolled symptoms that would otherwise require hospitalization.

This dilemma entered my personal life earlier this year. The caregiver for my 96-year old grandmother found her slumped over and unresponsive in her wheelchair in her apartment, where she lived alone, but with the support of aides around the clock. She did not regain consciousness, and the paramedics arrived to take her to the hospital. When my uncle called to tell me what was going on, I was unsure of how to respond. My grandmother’s health and cognition had been declining over the past few months, but her quality of life was still good. In that moment, though, my clinical intuition was that she was dying. As a palliative care physician, wasn’t it now my job to protect my grandmother from spending what could be her final hours in a hospital? On the other hand, without seeing her how could I be sure that whatever was happening could not be fixed? With uncertainty and emotion clouding my judgment, I froze.

The paramedic took the phone and gently explained that he wanted to ensure my grandmother had all the care she needed, whatever the outcome. Taking her to the hospital was the right decision. The doctor in the emergency department empathically told us he thought my grandmother was dying and recommended we focus on ensuring that the short time she had left was as comfortable as possible. The nurses quietly checked on her throughout the night, looking for any signs of distress. My grandmother died the next morning — in the hospital and at peace.

The quality and consistency of end-of-life care are not where they need to be. To ensure that all people receive the same compassionate care that my grandmother did, we need to focus not only on where, but also on how they die. When we view all deaths in the hospital as failures, we risk neglecting a critical opportunity to improve the dying experience for many of our society’s sickest and most vulnerable. Clinicians across medicine should elicit and, whenever possible, honor their patients’ preferences for where they want to die. At the same time, we need to acknowledge our own uncertainties and be honest — with ourselves and our patients — about the difficult trade-offs these choices entail.

Complete Article HERE!

War on words…

Cancer is a disease, not a battle

Emeritus professor Alan Bleakley and cancer patient Jacinta Elliott on the use of military metaphors, and Adrienne Betteley of Macmillan Cancer Support on end-of-life care

It is heartening to see a front-page article on the burden that the use of cancer war metaphors may place on patients (Cancer war metaphors may harm recovery, 10 August), but we should also note that such metaphors continue to place a burden on doctors and nurses, framing contemporary healthcare – dominated by medicine – as heroic, rather than pacific.

Further, it is simply wrong for the researchers that you quote to say of the relationship between martial metaphors and their impact on patients that “nobody has actually studied it”. Particularly since Sam Vaisrub’s 1977 book Medicine’s Metaphors and Susan Sontag’s 1978 polemic Illness as Metaphor, studies have isolated differing effects of a wide-ranging typology of violence metaphors on patients by age, sex and demographics. Professor Elena Semino and colleagues at the University of Lancaster have been at the forefront of such research in the UK for many years. Global research in the field is summarised in my 2017 book Thinking With Metaphors in Medicine.

To understand why war metaphors have such traction in medicine, we have to take a historical view. In 1627 the poet John Donne described how he thought he was dying from a fever that “blows up the heart”, that is a “cannon shot”. In the mid-17th century, the most famous physician in England, Thomas Sydenham, said that “disease has to be fought against, and the battle is not a battle for the sluggard”. Two centuries later, Louis Pasteur described illness as invading armies laying siege to the body that becomes a battlefield.

The phrase “war against cancer” was first used in the British Medical Journal in 1904. In 1971, Richard Nixon famously declared a “war on cancer”. No wonder that today’s patients are so readily stigmatised in the wake of centuries of martial insults. Isn’t a “hospital” supposed to be a place for “hospitality”?
Alan Bleakley
Emeritus professor of medical education and medical humanities, Plymouth University

Cancers are as variable as the people who develop them, so I heartily endorse comments made by Martin Ledwick, Cancer Research UK’s head information nurse, about everybody needing to find their own way of talking about it.

Battling metaphors hold an implicit suggestion that patients who succumb quickly have in some way failed to fight hard enough or have somehow “given in”, and that patients like myself who survive beyond their expected prognosis are in some way “tougher”.

Your report on recent research indicates that people can be put off seeking early treatment if the type of metaphors being used make it all sound too difficult and daunting.

This is very worrying as all the research shows that the earlier symptoms are detected, the better the chance of successful treatments and quality of life post-diagnosis.

There have been major advances in cancer treatments over the last few years. Instead of using off-putting language that deters people from getting symptoms investigated, we should broadcast news of steady progress in quicker identification and consequent longer life expectancy. So no “cure” as yet, but better options for living with cancer for as long as medically sustainable.
Jacinta Elliott
York

The ONS mortality report shows that dementia continues to be the leading single cause of death (Dementia is ‘biggest killer in England and Wales’, 7 August). But, if all cancers were grouped together then the disease would top the table.

Unfortunately, despite cancer accounting for over 145,000 deaths in 2018 (27% of the total), we know that thousands with the disease do not spend their final days as they would wish. Some are in hospital when they would rather be at home; others face insufficient pain relief, or are unaware of the choices available to them at the end of their lives.

This autumn, as NHS bodies draw up their plans for the next five years, it is critical that they set out how people at the end of life can get the truly personalised care they need.

Our hard-working NHS professionals do everything in their power to provide care and comfort at this crucial time, but there simply aren’t the numbers of staff with the right skills to have the important and compassionate conversations needed. It is vital that staff are provided with support and training so that they can prompt open discussions as early as possible and ensure people’s wishes are taken into account.

The only certainty in life is death, and we need to make sure that everyone has choice and dignity when it comes.
Adrienne Betteley
End-of-life care specialist adviser, Macmillan Cancer Support

Complete Article HERE!

How to avoid regret

What a doctor wishes people knew about living, dying well

By A. Pawlowski

Here’s what really matters at the end of life and how to avoid the biggest regrets.

Life is precious because it ends one day, but death is not the enemy. The enemy is a wasted life.

It’s a message Dr. BJ Miller, a hospice and palliative care specialist in San Francisco, wants people to remember as they come to terms with their mortality. Miller’s own brush with death as a college student left him a triple amputee and an advocate for a dignified end of life.

“There’s no guarantee for tomorrow, ever,” Miller told TODAY.

“Watching my patients die helps me think about what’s important to me in my life. So when it’s my time, hopefully I’ll have fewer regrets and, along the way, I hope to have a more meaningful life thanks to their lessons.”

Miller, co-author of the new book, “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death,” shared his findings on how to live and die well:

Avoid common and painful regrets at the end of life

Miller: There’s usually regret about having been unkind and selfish. It’s shame around having ever been a jerk to anybody, including to oneself.

One of the things dying teaches you is life goes on outside of you, too. You are a grain of sand among a gazillion grains of sand and the sooner you can delight in life outside of yourself, the better you’ll be able to handle your own death and the kinder, more forgiving you’ll be.

Life is just hard and there’s only so much we can get done in it. Forgiveness ends up being a huge theme. If you find yourself in a petty argument that kept you from re-establishing contact with someone you once loved, those get revealed to be practically almost silly at the end of life and people often regret losing contact.

Participate in your life and your dying

Miller: This is your life. Sometimes patients tell me they got robbed or that this is a huge detour or some anomaly in their life. The reminder is: No, this is your life — this is it. And because time is precious, if you don’t engage with your life on a real level, you are squandering your time.

Be an active participant in your own life in every way, including your illness and your dying, because those are parts of your life — your life while you have it. You don’t need to control everything, just participate.

Remember what people at the end of life care about most

Miller: If someone is lucky enough to have a family or a group of friends who are nearby, one thing a dying person really wants to know is that their loved ones are going to be OK. That they’re going to keep living, keep trying and going to try to love themselves and the world. That’s a really powerful thing.

So as a loved one, one of the kindest things you can do for someone who is dying is to let them know you’re going to take care of yourself. That’s not a selfish thing; that’s something the dying person will often really long to hear.

Take comfort that many people have accepted the end

Miller: In most cases I’ve been involved with, by the time death rolls around, the dying person is often really done with this body, done with this life. And whether by force or by choice, acceptance often does come because the fact of dying becomes just so obvious, it’s just so clearly coming.

Dying is often harder in some ways on the people around the dying person — harder on the people who have to keep living.

Clean out the skeletons in your closet before the end

Miller: There’s a hygiene to the process of dying. You go through life and accumulate all this stuff and all that has to go away when you die. You can leave all this emotional and physical residue of stuff, or you can clean it up and by doing so, leave less of a mess for people who are going to live on.

It’s a cleaner grief, in a way, not complicated by finding old letters with secrets in them that can be a source of torture. If you clean up your life on the way out, it can feel wonderful, it can feel very true and it can be an extremely kind gift.

Keep hope going

Miller: I honestly believe that we as a species will do better if we come to terms with our mortality earlier in life. Get used to exercising hope within the framework of life being short and precious.

If my patients come to me and are losing hope, I’ll say “OK, let’s come to terms with the hope that’s being lost. Let’s grieve that, but now let’s find what we still can hope for.”

As long as you have another breath in you, you can hope for something.

As long as you have another breath in you, you can hope for something: Peace, comfort, the well-being of people you love. It’s always a matter of framing your hope.

Simple pleasures, rather than grand moments, are appreciated at the end of life

Miller: It may be simply going outside and feeling the sun on your skin. A shower can be magical, sunlight can be magical. Just delighting in the cool breeze on your face or the sound of laughter. Very basic primal stuff.

Think about what might happen after death

Miller: If you’re around folks who are taking their final breaths, you can see life going out of somebody. You can tell the body is just a shell, something is gone now. Where does that life go? Is there a soul? Is there a spirit?

I find a joy in not knowing. I know dying, but I don’t know death. My compromise is to embrace the mystery of it all.

Complete Article HERE!

Kathy Brandt, A Hospice Expert Who Invited The World Into Her Own Last Days With Cancer, Dies

In January, Kathy Brandt (right) was diagnosed with stage 3 ovarian clear cell carcinoma and learned she had mere months to live. She is pursuing aggressive palliative care, forgoing treatments such as chemotherapy or radiation.

by JoNel Aleccia

Kathy Brandt, a hospice industry leader who turned her own terminal cancer diagnosis into a public conversation about choices at the end of life, died Aug. 4. She was 54.

Brandt’s death was announced on social media by her wife and partner of 18 years, Kimberly Acquaviva, 47, a professor of nursing and author of a book about hospice care for LGBTQ patients and families.

“I wanted all of you to know that Kathy had a peaceful death and your love and support is what made that possible,” Acquaviva wrote in comments posted to Facebook. “Our family has felt your love and we can’t begin to tell you how much it’s meant to us.”

Brandt died at the Charlottesville, Va., home she shared with her wife, their 19-year-old son, Greyson Acquaviva, and their dogs, Dizzy and Mitzi. She was diagnosed in January with stage 3 ovarian clear cell carcinoma, a rare and aggressive cancer.

For the past several months, Brandt and Acquaviva chronicled the day-to-day drama of dying in a series of frank, intimate posts on Facebook and Twitter aimed at demystifying the process and empowering other patients.

After researching her disease, which has a median prognosis of less than 13 months and often fails to respond to chemotherapy, Brandt refused drug treatment, declining what she regarded as “futile” medicine. Instead, she chose aggressive palliative care to manage her symptoms, to the dismay of some friends and family — and even her oncologist.

“If it’s not going to save my life, then why would I go through trying to get an extra month, when that month leading up to it would be terrible?” Brandt told Kaiser Health News in April.

The couple’s posts were followed by hundreds of well-wishers who donated more than $80,000 to help defray living expenses and medical costs. The essays and tweets were an unusually intimate window into the physical, emotional and psychological process of dying.

In April, Brandt described herself as a “dead woman walking” on the sidewalks of Washington, D.C., where they lived until June.

“It’s surreal trying to go about a ‘normal’ life when you know you aren’t going to be around in a few months,” she wrote.

During the last weeks of Brandt’s illness, Acquaviva tweeted about her partner’s bowels, posted photos of her sleeping and shared that Brandt was distressed about what would happen to her and to her family when she died. The frank posts prompted concern from people who asked whether Brandt had consented to have her death live-tweeted for the world. Acquaviva replied:

“My wife @Kathy_Brandt is a hospice and palliative care professional, as am I. She decided early on that she wanted us to share her dying process — all of it — publicly so that she could keep educating people about death and dying until her last breath.”

A well-known hospice industry leader and consultant, Brandt spent three decades in the field and was most recently tapped to write and edit the latest version of clinical guidelines for quality palliative care.

The willingness of Brandt and Acquaviva to share an unflinching account of terminal cancer drew praise from fellow hospice and palliative care experts, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization and their longtime friend.

“As she did throughout her professional career, Kathy has continued to teach the field about compassionate care and patient self-determination,” he wrote in an email before her death.

Elena Prendergast, an assistant professor of nursing at Augusta University in Georgia, wrote that she was moved by their experience.

“I have gone through this with family and with patients, but somehow you both have found a way. With your humor and raw transparency, you both make me feel like I am learning about this process for the first time,” Prendergast tweeted last month.

Brandt remained passionate about encouraging patients to consider the full range of choices when confronting terminal illness.

“If you’re ever diagnosed with a disease that will ultimately kill you no matter what you do, think through what you want the rest of your life to look like,” she wrote in a July 11 email. “Then seek out care that will help you make that version a reality.”

Acquaviva said they had worried that Brandt would not receive the care they’d hoped for in a hospice setting — despite their long efforts to advocate for better conditions for LGBTQ people.

In a post on their gofundme page, Acquaviva urged: “Do whatever you can to ensure that ALL LGBTQ+ people — not just those who know who to call or what to ask for — have access to hospice care provided by professionals who will treat them with dignity, respect, and clinical competence.”

Brandt asked that her obituary appear in The New York Times. It is scheduled to run next weekend, Acquaviva said, and it includes a final request that nods to the activism that characterized Brandt’s work on behalf of LGBTQ people and others who need end-of-life care.

“From the time that Kathy was diagnosed with clear cell ovarian cancer six months ago, she was clear with her family that the cause of death should be listed as the Trump Presidency in her obituary. In lieu of flowers, the family asks that donations be sent to whichever candidate secures the Democratic nomination, even if you really wish someone better were running.”

A memorial for Brandt will be held at 2 p.m. Oct. 26 at Friends Meeting of Washington, 2111 Florida Ave. NW, Washington, D.C. 20008.

Complete Article HERE!

I’ll See Myself Out

Medical Assisted Dying

Amanda and Kaitlin Pettit with their mom and dad when they were young.

By Hillary Ollenberger

Imagine suffering everyday from severe pain and being told by physicians your condition will only get worse with time. What would you do? Would you start researching treatments, looking for anything to take away a little bit of the suffering? Or would you decide that ending your life is the only option?

Medical assistance in dying, also known as MAID, is a controversial topic. With medical assisted dying becoming legal across Canada in 2016, there are still many people who do not agree with it.

But Kaitlin Pettit, who lost her father Randy last year, believes that unless you have been in that position, you do not have the right to judge their decision of choosing medical assisted dying.

Randy Pettit, 60, from London, Ont., was suffering from a terminal illness caused by his diabetes that eventually led to heart, kidney, and liver failure. He passed away on Aug. 9th, 2018 with the help of MAID.

“Growing up, my dad was everything I could have wished for in a father,” says Kaitlin. She remembers how her father would always make her laugh and had the best sense of humour.

“He was an extremely hard worker and made sure my sister and I had everything we ever wanted,” she says.

She recalls some of her favourite memories of her dad, including family trips, watching the Toronto Maple Leaf games, and just sitting and chatting with him.

“My father had complications from diabetes,” says Kaitlin. “He always thought he would beat it, we all did. None of us knew how serious it was, but as time progressed, the reality kicked in.”

Randy chose MAID in June of 2018. According to Alberta Health Services, up until Feb. 28th, 2019, there had been a total of 628 MAID deaths in Alberta; this number continues to grow.

Randy Pettit in his Maple Leaf jersey.

“He had discussed it with my mom first before telling my sister and I,” says Kaitlin. “My father did consider other options before he decided he was going to do the medically assisted dying.”

According to the College of Family Physicians of Canada, Quebec became the first province in Canada to pass legislation to allow “medical aid in dying.” The act defines medical aid in dying as “administration by a physician of medications or substances to an end-of-life patient, at the patient’s request, in order to relieve their suffering by hastening death.”

Kaitlin says her father was initially going to pass away naturally. But his illness was spreading quickly to his organs, and he was suffering.

“At first we all had mixed feelings on his decision. Some days we supported him and other days we were hoping we’d wake up and this would all be a bad dream. As the time got closer and we watched him suffer day in and day out, we all began to put our feelings aside and realize what was in the best interest for him.”-Kaitlin Pettit

For a patient who wishes to receive MAID, there are many ethical deliberations that take place with the physician and patient before moving on to the next step.

Dr. Stefanie Green is a MAID provider who assesses patients and provides medical assisted dying in British Columbia. Green says that for a patient seeking MAID, there is a very robust process that takes place.

Green explains that the patient first needs to be the one to ask for the assisted death. The patient then completes a written form that states they requested the assisted death; this has to be witnessed by two independent people who will not benefit from the death or be someone who provides medical care to them.

After the written request is made and witnessed by others properly, there are then two different assessments that need to be done by two separate independent clinicians.

“So that can be either physicians or nurse practitioners, and those clinicians work separately with the patient to see if they’re medically and legally eligible for the care,” says Green. “Once they both agree separately that that’s the case, then the patient can go ahead and set a date to make a plan for an assisted death. It doesn’t mean they have to do it, but that they’re eligible and empowered to do so.”

Rather than calling it euthanasia, Green says that the proper term is MAID, medical assistance in dying.

“It encompasses two different terminologies. One is what’s technically known as assisted suicide, which is when the patient is given the medication and the patient then takes the medication from the clinician and self administers it,” says Green. “But voluntary euthanasia is when the doctor administers the medications themselves, usually through intravenous.”

Green says the vast majority of cases here in Canada, around 99 per cent, have been voluntary euthanasia with the doctor administering medications.

Green says MAID is not just about the patient being able to control their pain and symptoms.

“Most commonly it’s about a patient finding that they have no more meaning in their life and that they’re no longer able to have autonomous activity and find meaning or joy in their life the way that they used to due to their illness.”

Green explains that for the patient, it’s about independence and autonomy.

In order to be eligible for MAID, the patient must meet five specific criteria: they must be over the age of 18; eligible for funding under Canadian health care; suffering from a grievous and irremediable condition; the request for MAID must be voluntary; and their natural death must be in the foreseeable future.

When it comes to a patient choosing MAID, Green says that someone who is suffering from depression without any other symptoms is not eligible.

“In my opinion, a patient who has acute depression does not have the capacity to make this choice because their decision-making capacity is clouded by the mental health,” says Green. “So no, they could not go ahead. There is a set of criteria that must be met, and if they’re not met then the person who provides their care is liable to be prosecuted.”

In terms of individuals who are against MAID, Green says that from her experience, she sees very few people who disagree with this process. Of the 125 cases she has personally assisted, she can only think of a few where a family member was not in agreement with the patient.

“You can imagine that the people who go through this process with me, by definition, are suffering intolerably. What I do see is a lot of relief, and a lot of sadness that they’re going to lose a loved one.” -Dr. Green

Randy Pettit in the hospital.

Although Green is very passionate about her job, she admits it can be hard. Green says that it takes a lot of time to assess the patient, which also means spending a lot of time getting to know them.

“Quite honestly, I find this work incredibly rewarding,” says Green. “I find that the patients are very grateful for my help and the vast majority of the family members are as well.

So I feel like I’m helping people and I would never help anyone who I don’t believe meets all the criteria.”

Green says that she is comfortable with the work she does and believes she is offering a service for people that is needed and desired.

Although doctors like Green believe MAID is a good option for Canadians, many feel it is unethical and should be illegal.

Alex Schadenberg is the executive director of the Euthanasia Prevention Coalition. Running for over 20 years now, Schadenberg and his team deal with the issues of euthanasia in Canada as well as on an international level.

“I think by the name of the group, you can see I obviously believe that without a question, causing another person’s death, even if they ask for it, is not a good thing.” -Alex Schadenberg.

Schadenberg explains that according to the law, MAID gives power to doctors and nurse practitioners to cause death.

“Not too long ago in Canada, it was considered homicide,” says Schadenberg. “Because we’re not talking about assisted suicide in Canada. We’re talking about euthanasia, lethal injection.”

Schadenberg feels that MAID is a very dangerous concept.

“It’s not about the right to die on their own terms. That’s a misnomer from the beginning,” says Schadenberg. “It’s actually terminology that’s based on a lie. It’s a concept, someone else is killing you. You’ve requested it.”

Schadenberg says three recent reports came up from the Council of Canadian Academics regarding the expansion of euthanasia to children and people with psychiatric conditions.

This is something that is not new to Belgium. With medical assisted dying being legal since 2002, the country also allows medical assisted dying to children. According to the website My Death My Decision, since 2014, competent children can receive euthanasia if they are terminally ill and in great pain.

“This is a very bad concept to be expanding euthanasia to children or to people who have psychiatric conditions,” says Schadenberg. He believes there are a lot of grey areas when it comes to MAID, including Bill C-14, which was put in place on June 17th, 2016.

According to the Government of Canada’s Department of Justice, Bill C-14 allows physicians and nurse practitioners to provide assistance in dying to competent adults who meet the criteria.

Schadenberg feels that Bill C-14 is a sham.

“So what they did is they said Canadians wanted it to be for people with terminal conditions,” says Schadenberg. “So they put that section of the law as, your natural death must be reasonably foreseeable. What does that mean?”

Schadenberg believes that to justify Bill C-14 based on autonomy assumes the patient is not going through great existential, psychological distress.

Dying With Dignity, on the other hand, states that, “although some clinicians interpreted the ‘reasonably foreseeable’ rule to mean a person must be terminally ill, the government specifically stated that that isn’t the case.”

“Caring not Killing” is Schadenberg’s main goal out of all of this. He believes society would be happier if we had good care in place of medically assisted death.
“I don’t think you should ever in society give the power over life and death with somebody else,” says Schadenberg.

Schadenberg is not the only one opposed to MAID. Faith-based hospitals have the right to refuse assisted dying to their patients.
After trying to get into contact with a nurse who works at a faith-based hospital, Leah Janzen, the director of communication from Covenant Health provided a link to their website for answers.

Their policy from CovenantHealth.ca says that:

“While Covenant Health personnel shall neither unnecessarily prolong nor hasten death, the organization nevertheless reaffirms its commitment to provide quality palliative/hospice and end-of-life care, promoting compassionate support for persons in our care and their families.”

Although Covenant Health disagrees with MAID, they still want to give support to their patients who are experiencing any pain or suffering.

They say their goal of care in faith-based hospitals is to reduce suffering and they are “prohibited from participating in any actions of commission or omission that are directly intended to cause death through the deliberate prescribing or administration of a lethal agent.”

Covenant Health could be a good option for patients who are on the fence with MAID but still want to receive support.

But just because someone chooses MAID, does not mean they are necessarily without beliefs or religion.

Kaitlin Pettit says her father was a religious man that prayed a lot.

“My mom’s minister came to our house and visited/prayed with him two days before he passed,” she says.

For her and her family, a place like Covenant Health was not an option.

With his complications from diabetes and his pain increasing, they knew MAID was the right choice.

“He refused to go to hospice and wanted to go on his own terms” she says.

During Randy Pettit’s final days at home, he had nurses and family members check in on him to make sure he was comfortable.

“I know his fight is now over and he is pain-free and that was my only wish for him,” says Kaitlin. “My dad had the privilege to stay at home thanks to his medical team up until the day of his procedure.”

Randy Pettit surrounded by family for a final goodbye.

When it was time for Randy to go to the hospital, the paramedics carried him down the stairs and let him sit outside in the sun for 20 minutes; his illness had prevented him from being out of the house for over a year.

“I will never forget that day — we all arrived in trauma, in Maple Leaf jerseys. We had one last drink to cheers what a great father he has been,” says Kaitlin. “It was quite the send-off and I know he was at peace with his decision.”

“As we all said our goodbyes, he looked at us and said, ‘I hope one day you will all understand why I had to do what I am doing.’”

The last thing Kaitlin said to her father was she loved him and was proud of how brave he was.

Complete Article HERE!

How to Confront, Prepare for, and Talk With Loved Ones About Death

By Elizabeth Kiefer

The average life expectancy in the United States is now 78.6 years old, according to the most recent data available from the Center for Disease Control (CDC). That’s almost two times what it was a century ago, when it was just 39.

While some might believe we’re on a path toward immortality, at least for now, death remains the one certain rite of passage that arrives for everyone eventually, and Dr. B.J. Miller believes a reckoning is in order.

“It’s high time to review the very common, boring truth that we’re all going to die,” says Miller, a hospice and palliative care physician whose TED Talk, “What Really Matters at the End of Life?” has been viewed more than one million times. The twist: More open conversations about death and dying may in fact help us all get more meaning out of life.

That’s one takeaway from Miller’s new book, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, co-written with Shoshana Berger. Part manual for practical stuff (like how to deal with the mountain of paperwork when someone passes) and more heart-centric subjects (like personal legacy and grieving for loved ones), the book is intended as a resource for anyone who will experience its subject matter, aka all of us. Prevention spoke with him about why talking about death talk is on the rise in the wider culture—and why it’s something to start discussing sooner than later.

We’re about to be the oldest, frailest population ever.

Americans have reached a pivotal population point. “We are about to be, in actual terms and relative terms, the oldest, frailest population ever,” says Miller. “Everyone’s going to be living with chronic illness, everyone’s going to be dying from chronic illness, in numbers we’ve never seen before.” Mass migration into retirement centers and care facilities isn’t the solution—but a more open, pragmatic dialog about quality of life and personal desires could be, Miller believes.

So, it’s time to develop a “relationship” with death.

There’s a reason talking to a sick loved one or sitting down to write a condolence letter can be so paralyzing.

“We don’t have the right language, or we worry we’ll say something at the wrong time and scare the person we’re talking to,” Miller says. His solution: “Think about it like a series of conversations, not a long-time talk.”

Discussing death in the abstract with someone when their health is good can also help you understand what they may want, and need, down the line; furthermore, it can empower you to articulate those things for yourself. Will those kinds of talks potentially make you anxious? Of course. But the aim is normalization over time—and that comes with a silver lining. “There’s a secret in the hospice world: Most people who do this kind of work and are around this subject a lot will probably tell you that their lives are better for it,” says Miller.

Listen to your loved ones.

Miller has observed that patients know more about what’s going on with their health than anyone else does—or that they may be letting on. A person might hesitate to bring up their thoughts about dying because it sounds like negative thinking. “The patient themselves is languishing, not knowing how to talk about it, or they don’t want to hurt their family’s feelings,” Miller says.

His advice is to “keep an eye out. The moment dad says, ‘I’m not sure about this treatment,’ or [mom] starts talking a lot about God,” give them the opportunity to follow that thread. You can come at the conversation from a philosophical or spiritual angle, focusing on beliefs or fears, but the point is to listen and hear them out. “When they crack the window, dare to enter it.”

It’s okay—actually, essential—to talk about costs.

Miller has seen caregivers lose their jobs, drain their bank accounts, and undermine the financial stability of their own families. “It’s as though bankrupting yourself for a loved one is the currency to show how much you care, even though everyone in the mix knows the person is going to be dying,” he says. But while you can’t place a monetary value on a life, it’s okay to keep money in the conversation. “Invite this variable into the mix in a conversation with your doctor,” says Miller. “It’s not just the medication or the pacemaker. It’s the cost of living with this thing.”

Furthermore, he adds: “Our healthcare system is wired to extend bodily life at all costs, and as our technologies have improved you can prop up a body practically indefinitely,” Miller says. “As patients—as people—you have to upend the medical system. You have to disrupt it and say ‘no thanks.’ Otherwise you’ll land in ICUs with tubes in every orifice and your family has got to decide how to schedule unplugging you.”

Ask yourself: Can I afford to die?

“Our commercial world, our health and benefits—all of it shows this huge design flaw: Dying is not baked into the plan,” says Miller. “We tried to erase it and it can’t be erased.” The result: a framework, from retirement saving plans to health insurance programs, that don’t include the costs associated with death in the picture. Which means: “You need to save more than you think you do—sock away money.”

Bear in mind what’s covered, too. An experimental treatment could be entirely out of pocket, while hospice is highly subsidized. At the end of the day: “It’s about harm reduction. You’ve got two shitty options. But a less shitty option is better, and that could make an important difference.”

Think out of the box about legacy.

“Selfish people do not tend to die happy because they can’t see the world outside themselves,” Miller says. Learning to do that—to care about the world beyond your presence in it—can help us all become kinder people, but it can also help frame thoughts about what you want to leave behind.

Miller is referring to legacy, which might be the best shot we get at immortality. But while we tend to immediately jump to monetary donations, it can be any mark on the world you’ve left behind. Miller tells a story about a man who used to sit out on his front porch and wave at everyone who went by; when he passed, “the whole neighborhood changed, just because that guy wasn’t out there waving.” The bottom line: “You’re going to affect people, no matter what you do.” So try to leave behind something they will remember with a smile.

Complete Article HERE!

When your spouse becomes your caregiver

After Michael Draper was diagnosed with a rare brain disease, his husband retired to take care of him full-time

Terry Wicks, left, and Michael Draper

By DAVID TAFFET

Michael Draper describes the condition he’s been dealing with for seven years as a “designer disease.” His husband, Terry Wicks, said that when they finally received a diagnoses, “the bottom dropped out of our world.”

Draper went almost two years before receiving a diagnosis of MSA — multiple system atrophy — a progressive neurodegenerative brain disorder that results in death.

Wicks has become his full-time caregiver.

MSA is often misdiagnosed as Parkinson’s Disease, but it seems to be more related to other diseases like PSP and Alzheimer’s characterized by a build up of certain proteins in the brain. Wicks explained that with MSA, the proteins needed to transmit signals from one cell to another seem to crumple and block transmission. As that happens, brain cells die.

Functions that are automatic — maintaining body temperature, swallowing, breathing, eliminating waste — stop working. Speech is affected. Muscle coordination deteriorates. The person with MSA becomes unable to take care of himself.

In 2013, the couple was living in California. Draper was an executive with Yahoo. Wicks was an MRI technician.

Wicks remembers asking his husband one day, “Why are you so clumsy lately?”

After a year of a variety of symptoms presenting themselves and several doctors unable to diagnose what was wrong, they went to Stanford for a diagnosis. After almost a year of visits, their doctor told them that she was waiting for one more symptom to appear. When it did, she confirmed MSA.

Symptoms appear when a person is in his or her 50s. Draper was 52 when they first recognized something was wrong. Those manifestations progress for five to 10 years.

New drugs are being tried to halt progression, but Wicks said his husband’s condition was too advanced for the medications to work. And because it takes so long to diagnose, most people have progressed beyond the point where these medications will help.

Four years ago, both men had to stop working. Draper was unable to work any longer so Wicks, who’s seven years older, retired to take care of him.

They decided to move back to Dallas to be closer to family. Their doctor at Stanford told them Dallas was a perfect choice because a colleague of hers had recently opened an MSA clinic at UT Southwestern, so Draper would receive top medical care.

Wicks made a trip by himself and purchased a house in Garland. He said it was the only time in their 29 years together that he had bought a house without his husband.

Wicks describes himself as a planner. So before leaving, he had planned what they needed in a house. He found one in Garland that fit his needs — a 1980s one-story ranch without any stairs or steep inclines that could be outfitted for their needs.

Among the work needed on the house was a complete bathroom redo. They replaced the tub with a walk-in shower fitted with a large tiled seat and an entrance without a step so that a wheelchair can roll in.

Because someone with MSA eventually has trouble turning around, Wicks found something he calls a pivot disk, sort of a lazy susan for people. From his wheelchair, Draper can stand and Wicks rotates him 180 degrees so he can sit in the shower or on the toilet.

Wicks said a person who needs this level of care loses all personal dignity and they’ve worked to keep Draper as independent as possible as long as possible. When he couldn’t brush his own teeth with a regular brush, they got an electric toothbrush.

Draper joked that he could still use a razor as long as his husband didn’t mind seeing him with slash marks all over his face. An electric razor allows him to continue shaving himself for now.

While they still are able to make a trip to the hair salon to get his hair cut, their hairdresser said he’d come to house once he can’t get out any longer.

Until recently, Draper had been using mostly a walker. Lately, he’s less able to make it around the house that way, and he’s begun relying more on his wheelchair.

Over the last few weeks, Wicks said he’s also begun having to use a catheter in order to urinate.

Draper said he feels guilty that he’s putting his husband through this, but Wicks wouldn’t have it any other way.

To help them deal with their situation, they go to support groups. Spouses taking care of their spouses compare, commiserate and share. That’s how he learned about the pivot disk. Those with the rare disorder that may affect only about 15,000 Americans don’t feel as alone when they get together.

Wicks is also careful about caregiver fatigue. Draper’s parents will take care of him for a week while Wicks takes a trip to the Seattle area where the couple lived for a number of years to help decide if after his husband’s death, he wants to move back there.

Draper encouraged his husband to take the trip. This way, he can participate in making future plans even if he won’t share them himself. He wants to know his husband will be all right and will return to having a life beyond caregiving.

Wicks said he still is able to leave Draper alone for an hour to run out to the store for groceries. As Draper’s condition deteriorates, Wicks said he’ll have to hire someone to come into the house to relieve him so he can do errands.

Caregiving that includes everything from personal care to doing all of the housework is a full-time job, Wicks explained.

“Unless you’ve done it, you have no idea how much it entails,” he said.

In addition to the physical labor, caregiving involves stress. Wicks described what he’s going through as anticipatory grief. Most people don’t grieve until their spouse is gone, and Draper has already outlived original projections for his life expectancy with MSA.

Wicks doesn’t know if the grieving he’s going through now — imagining what life will be like without his husband — will facilitate the grief he’ll feel after his husband’s death or if he’ll experience the loss he’s expecting all over again.

But that anticipatory grief also propels him to make the best life he can for both of them. Draper still has his sense of humor even as communicating grows more difficult. But as they look at each other and tell their story wishing it was headed toward a different ending, there’s a contentment and bliss in their just being together.

Complete Article HERE!