The Role of Nurses When Patients Decide to End Their Lives

Some hospitals and hospices have policies that forbid nurses to be part of the process or even to discuss end-of-life options.

By Emilie Le Beau Lucchesi

When Ben Wald, 75, was dying of cancer in 2012, he wanted to use Oregon’s Death with Dignity Act to receive a prescription for a lethal medication that would end his life. His hospice nurse, Linda, was part of the discussion and provided both information and support, said his wife, Pam Wald, of Kings Valley, Ore.

His colon cancer had spread to his lungs, and his weight dropped from 180 to 118 pounds. He struggled to speak or eat.

When he was ready to end his life, the couple wanted Linda with them, but the hospice organization she worked for did not allow it, Mrs. Wald said. The organization allowed other hospice workers, such as social workers and massage therapists, to be present, but not the doctors or nurses it employed.

Without a nurse present, Mrs. Wald was going to be alone with her husband when he died. She wanted someone knowledgeable to support her through the process. She reached out to Compassion & Choices, a national advocacy group for aid in dying. The group paired her with two volunteers, one of whom was a retired intensive care nurse.

“You watch your husband die and you hear that change in breathing,” Mrs. Wald said. “Jane, the I.C.U. nurse, she said, ‘The breathing changes. You’re doing fine, Pam. Keep holding his hands.’”

As access to aid in dying expands this fall, one in five Americans will live in a state that permits legal aid in dying.

But many may still run into the problem the Walds had, because some hospitals and hospices see medical aid in dying as conflicting with their traditional mission of protecting life and avoiding harm to patients. Those that are faith-based typically follow church policy against medical aid in dying.

Some have policies that forbid nurses even to discuss end of life options. Others hold a “neutral” stance on aid in dying, but bar doctors or nurses from being in the room while a patient self-ingests the medication and begins the dying process.

In June, the American Nurses Association passed a position statement providing guidance on the nurse’s role in medical aid in dying, said Liz Stokes, the director of the American Nurses Association Center for Ethics and Human Rights.

“We want to be clear: Nurses absolutely do not have to be present or provide that comfort if they feel they have a moral or religious objection. Our code of ethics states they have the right to object,” Ms. Stokes said.

But for those who wish to support their patients, the new statement defines key words such as “participation” and “presence.” These definitions are meant to encourage organizations to be clearer in terms of a nurse’s ability to answer questions during the decision-making process or offer support in the final moments.

Currently, Ms. Stokes said many company policies are vague and difficult to interpret. Even terms like “to witness” or “to be present” may be open to interpretation. Ms. Stokes said the association has received inquiries from nurses wondering if covering their eyes qualified as not witnessing.

A 2014 study in the Journal of Pain and Symptom Management analyzed 30 policies from members of the hospice and palliative care organization in Washington, where aid in dying has been available since 2009.

Of the policies analyzed, 78 percent prevented nurses or other staff members from being present during or after the prescription was taken. The authors described the policies as “relatively silent” about the rationale for their decisions, but some referred to medical aid in dying as being “outside the scope of hospice practice.” Others did not want to be seen as “taking sides.”

The hospices that allowed staff members to be present made note of the core hospice value of not abandoning patients.

The study found that although the policies tend to be vague, there is a clear distinction between the role of the physician and that of the hospice. Physicians who write the prescription might not be employed by the hospice and therefore not subject to the organization’s particular policies. Policies note that physicians have a responsibility to respond to any complications that might occur after the prescription is ingested.

Each jurisdiction that permits medical aid in dying publishes annual reports on who took the medication, and why, where and whether medical practitioners were present.

In California’s report for 2018, only 54.3 percent of aid in dying patients were reported to have a medical care provider present at the time of ingestion. In Oregon’s 2017 report, only 33 percent of patients did. Many of these medical providers did not remain at the bedside, and 70 percent of patients in Oregon did not have a provider present at the time of death.

Keith Seckel, a registered nurse in Corvallis, Ore., believes it can be helpful to have a medical practitioner present. He has taken care of about a dozen patients who utilized their state’s aid in dying law. He was with them and their families as they took the lethal medicine and died. Mr. Seckel said a nurse is helpful in managing a patient’s discomfort or pain before taking the medication.

Many patients at the end of life experience anxiety, constipation, nausea, pain or shortness of breath. A patient who is short of breath, for example, might get anxious about swallowing the medicine for fear of choking. A nurse can provide reassurance, which Mr. Seckel said takes the pressure off the patient and family members to “get it right.”

He said that having a nurse in the room can also ease the stress for family members, particularly when their loved one makes unfamiliar sounds or unexpected movements.

Mr. Seckel said the timeline varies for each patient. The patient usually takes an anti-nausea medication anywhere from 15 to 60 minutes in advance. In all jurisdictions, the patient must administer the medicines themselves. Nurses and physicians are prohibited from assisting.

Mr. Seckel said some patients then take an anti-anxiety medication before the fatal dose. Within minutes, patients typically report feeling drowsy.

“I might offer to the patient, ‘If you can feel it hitting you, if there is something you want to say, say it now,’” Mr. Seckel said.

The patient then slips into unconsciousness. Mr. Seckel said he watches for signs of discomfort or pain. Some family members ask him for updates as their loved one’s breathing begins to slow or color drains from their skin. Others, Mr. Seckel said, are too connected to the moment to ask questions but want to review the experience with him later.

Because the laws clearly state that a patient must be able to take the medicine without assistance, Mr. Seckel said patients often have questions about their disease progression and how much time they likely have until they can no longer take the lethal medicine on their own. Often, the role of the nurse is to give patients information so they can determine a timeline for themselves.

He said there have also been times when he has been called to the bedside after the patient passed. He said it’s not uncommon for family members to want confirmation that their loved one is truly gone. “I’ve had more than one person say, ‘I’m glad you were there, we wouldn’t have known what to do,’” Mr. Seckel said.

Complete Article HERE!

Who Uses Medical Aid to Die in Oregon and Washington?

The researchers compared demographics of users in the states with the longest-running programs.

There are many similarities among those utilizing medical aid-in-dying programs in Oregon and Washington, researchers have found.

By Katelyn Newman

The outcomes of medical aid-in-dying laws in the two states with the longest-running programs in the U.S. show many similarities in who is using the option, a new study finds.

With more states implementing laws to assist terminally ill patients in taking their lives, researchers from across the United States examined empirical data of Oregon and Washington to find out if there were similarities in who’s asking for and taking medical aid-in-dying prescriptions. The data came from published annual reports from the Oregon Health Authority and Washington State Department of Health that ranged from 1998 to 2017 in Oregon and from 2009 to 2017 in Washington.

They found that 2,558 – 76% – of the 3,368 written prescriptions resulted in patients’ deaths, with patients more likely to be non-Hispanic white (94.8%) and 65 years or older (72.4%). The most common underlying illnesses were cancer (76.4%), neurologic illness (10.2%), lung disease (5.6%) and heart disease (4.6%), with loss of autonomy, impaired quality of life and loss of dignity the most common reasons reported by clinicians for patients who pursue medical aid-in-dying. Ages of all participants over the time periods ranged from 20 to 102, and participation was nearly equally split between males and females.

“Among patients who ingested the lethal drugs and were evaluable for complications, only 4% experienced complications, the most common being difficulty ingesting or regurgitation of the lethal drug,” according to the study, published Friday in JAMA Network Open. “Short median times to unconsciousness and death prevent undue and lengthy suffering and reflect the efficacy of drugs used in (medical aid-in-dying).”

Further, the majority of patients who received the prescription had some college education (71.5%), had medical insurance (88.5%) and were enrolled in hospice care at the time of their deaths (76%). A total of 2,075 (81%) of the patients died at home, the study said.

So far, nine jurisdictions – eight states and the District of Columbia – have implemented medical aid-in-dying laws since Oregon’s went into effect in 1997, with New Jersey becoming the most recent on Aug. 1. Maine will join the group on Sept. 15, when its law goes into effect.

But using empirical data to show the demographics behind these longstanding laws portrays that the standard is inherently ethically good when data “cannot tell a society or a profession what ought to be done,” Dr. Daniel Sulmasy, acting director of the Kennedy Institute of Ethics and professor of biomedical ethics at Georgetown University and critic of the practice, wrote in an invited commentary that accompanied the study.

“Whether just 1 person or 100 000 persons legally avail themselves of lethal prescriptions cannot tell us whether the practice is right or wrong,” Sulmasy wrote. “Despite public arguments that (physician-assisted suicide) is needed to avoid excruciating pain and other symptoms, the reasons attributed to patients who seek PAS are not uncontrolled symptoms but lost autonomy, independence, and control.”

“About one-third of patients die without taking the drugs, which may suggest that patients only wanted the security of having a way out, but it could equally indicate that they died before using the drugs or changed their minds about using them,” he added.

Among its limitations, the study notes that the underlying reasons patients requested medical aid in dying were not collected from the patients themselves but rather from the physicians in a follow-up questionnaire. Still, the results presented show no intentional targeting of “socially disadvantaged patients,” an often cited concern among critics, and “most patients who acquired lethal prescriptions had cancer or terminal illnesses that are difficult to palliate,” according to the study.

“There is significant room for further integration of palliative care, social support services and case management in end-of-life decision-making with the intent of increasing the options available to those facing a terminal disease,” the study said.

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!

We’re in the middle of a revolution on death

Mary Klein, center, speaks at a news conference in Washington on April 5, 2018, to urge D.C. officials to educate doctors about the city’s “death with dignity” law.

By Jon Meacham

Jon Meacham is the author of “The Soul of America: The Battle for Our Better Angels.”

Tuesday was to be the day — in the morning, because everything was taken care of. The goodbyes had been said, the tears shed, the coffin handmade. In the spring of 2018, Dick Shannon, a former Silicon Valley engineer with untreatable cancer, took advantage of California’s “death with dignity” law to end his own life once all other medical possibilities had been exhausted.

“My observation about the way people die, at least in America, is they . . . are not allowed the opportunity to be part of the process,” Shannon explained. “For my way of thinking, the part that bothers me just immensely is not being allowed to be part of that process. It’s my death. Go with what you believe, but don’t tell me what I have to do.” Discussing the ultimate decision with his doctor, Shannon remarked, “It’s hard to fathom. I go to sleep and that’s the end of it. I’ll never know anything different.” He paused, then said simply: “Okay.”

When the day came, Shannon was ready. The end-of-life medical cocktail was mixed in a silver stainless steel cup, and he drank it in front of his loving and tearful family. “I’ve accepted the fact that I’m dying,” he’d said earlier. “There’s nothing I can do to stop it. Planning the final days of my life gives me a sense of participation and satisfaction.” As he prepared to slip away, he told his family, “Just know that I love you — each and every one of you.”

America is becoming ever more like itself when it comes to death. From Walden Pond to Huck Finn’s lighting out for the territory, we’re a nation of individualists, shaped and suffused by self-reliance and a stubborn allegiance to the live-free-or-die motto of the Revolutionary era. With this twist: Baby boomers and their successor generations are insisting on being free to take control of death itself. Innovation, creativity and customization — the hallmarks of our time, an age in which we can run much of our lives from our mobile phones — are now transforming both how we die and the mechanics of remembrance that come afterward.

The coming revolution in death — and Dick Shannon’s story — is laid out with uncommon wisdom in a powerful, new HBO documentary, “Alternate Endings,” which debuts Aug. 14. Only eight states and the District of Columbia have death-with-dignity laws, but three of those states — Hawaii, Maine and New Jersey — have put their statutes on the books within the past year. And 18 other states considered such laws in the 2019 legislative season.

The movement has not attracted the same attention it once did; in the 1990s, Jack “Dr. Death” Kevorkian, the right-to-die advocate, drew considerable public alarm. As the documentary by Perri Peltz and Matthew O’Neill makes clear, the conversation has entered a new and compelling phase now that Americans are thinking about death as something as disintermediated as commuting, dating and shopping.

The United States has a long history of rethinking the rituals of death. Embalming became part of the popular understanding and tradition of death during the Civil War; the task then was to preserve the bodies of dead soldiers so their families could see them one final time. Abraham Lincoln may have done the most to raise the profile of embalming when he chose first to embalm his 11-year-old son and then when his own corpse was embalmed for the long train ride home to Springfield, Ill., after his assassination.

Now the death industry in the United States has evolved with the culture. For many, corporate consolidation has reshaped a funeral home industry, which was once made up almost entirely of local, family-owned companies. (And which, as Jessica Mitford wrote in her 1963 book “The American Way of Death,” unctuously gouged grieving families.) The Internet has disrupted the casket industry with Walmart and others selling directly to families. As “Alternate Endings” reports, there are now green burials (including using a loved one’s ashes to help restore coral reefs), space burials and even drive-through, open-casket viewings.

Once the great gatekeeper of life and death, organized religion, too, is losing its sway. In an era in which friends routinely ordain themselves on the Internet to preside at weddings, the rising numbers of Americans who are “unaffiliated” with any particular faith mean that institutions that once gave shape to life and meaning to death are being gradually supplanted family to family.

The issues raised by Dick Shannon’s story are the most profound. Many religious authorities — notably the Roman Catholic Church — oppose euthanasia (Greek for a “good death”). Such teachings face a generational head wind as more people (and states) move from deferring to institutions to simply making their own decisions. The questions involved are intricate and complex and painful — but it is plain to see that we are witnessing another rite of passage undergoing an irrevocable disruption.

When the Shannons held a “living wake” for friends to say goodbye to Dick, the family hung a banner on the wall: “Life is what you celebrate. All of it. Even its end.” Before passing, Shannon said, “I want it to be on my terms.” Given that death comes for us all, so, too, will many of us have to confront the agonizing decision that he faced with grace.

Complete Article HERE!

‘Good Death’

Choosing How to Live and How to Die

By Matt McMillen

Patty Webster heard her mom talk about death. A lot. So often that she and her sisters sometimes had to stop their mother from bringing it up. Her message got through, though.

Before her mom died of a stroke in 2016 at age 73, a previous stroke had already robbed her of her ability to communicate. But her family knew what she wanted at the end of her life because she had made it plain to them. That allowed them to share her wishes with her doctors and others so that she could die as she chose.

“We were her voice,” Webster says. “I didn’t know what a gift all of those talks had been until then.”

Webster works for the Conversation Project, an initiative of the Boston-based Institute for Healthcare Improvement. Founded in 2010, it encourages people to become comfortable talking about the type of care they want — and don’t want — at the end of their lives. A survey the group conducted in 2018 found that 95% of Americans are open to discussions about their wishes. But only about 1 in 3 have talked about what they would want. Five years earlier, however, that number had been closer to 1 in 4. More people, it seems, are talking about how they want to die. Some more than others.

“My family is tired of me talking about it,” Webster says, laughing.

But Webster wants those discussions to continue, and she wants the number of people having them to keep growing. She also wants to clarify: “Don’t talk about death but about how you want to live.”

Expressing your wishes for the end of your life and having them respected: Some call it “a good death.” Others may refer to it as “successful dying.” Ira Byock, MD, prefers “dying well.” A palliative care specialist and chief medical officer of the Institute for Human Caring at Providence St. Joseph Health in Gardena, CA, Byock is also the author of Dying Well: Peace and Possibilities at the End of Life.

“Every one of us as adults should be having this conversation,” he says.

In fact, Byock and his colleagues talk to high school seniors about advanced care planning: “We want to normalize this and make it a part of growing up.”

In a paper published in 2016, researchers reviewed 36 previously published studies to determine the “core themes” of a good death. They looked at the question from three perspectives: the person dying, the family, and health care providers. While 11 themes emerged, all three groups ranked three themes as most important:

  • Deciding how they wanted to die, including who would be with them and having their treatment preferences and funeral plans prepared
  • Approaching death without pain
  • Being emotionally well, meaning their psychological and spiritual well-being has been addressed

States Adapt to Change

In some parts of the country, the conversation includes drugs that end your life. Oregon became the first state to enact the Death with Dignity Act, which voters approved in a 1994 refereundum. After years of court challenges, the law took effect in 1998. It allows residents who are terminally ill, have 6 months or less to live, and are deemed mentally able to make their own decisions to end their lives. Ten years would pass before another state, Washington, would approve its own version. Maine became the most recent state to pass a version of the law. Gov. Janet Mills signed it on June 12. These are the other states where doctor-aided dying has been made legal and when the laws took effect:

  • California (2016)
  • Colorado (2016)
  • District of Columbia (2016/2017)
  • Hawaii (2018/2019)
  • New Jersey (2019)
  • Vermont (Patient Choice and Control at the End of Life Act, 2013)
  • Montana (Although no Death with Dignity law exists in Montana, the state’s Supreme Court ruled in 2009 that the practice was legal.)
  • The laws have sparked opposition. In Maine, for example, the state legislature passed the law by only four votes. In California, the law was overturned in court last year, but an appeals court put a hold on that ruling, and the state’s Supreme Court chose not to review the case. That leaves the law, known as the End of Life Option Act, in effect, though its future remains uncertain.

    Between 2009 and 2017, the most recent year for which statistics are available, 1,364 people in Washington had used the law to end their lives. Last year, in California, 337 people chose to die under the state’s End of Life Option Act. In Oregon, 2,217 terminally ill people have received life-ending drugs over the past 2 decades. Nearly two-thirds used those drugs, while the rest opted not to take them.

    “That’s been the case year after year,” says Peter Lyon, MD, medical director of End of Life Choices Oregon, a Portland-based organization that helps Oregonians navigate the Death with Dignity Act and other final decisions. “Some people just like to know that the medicine is there and available if their pain becomes too severe or their condition worsens a great deal.”

    On average, says Lyon, people do not reach out to his organization until they have about 3 to 4 weeks left to live. One reason: It’s so difficult for many people to think about, let alone talk about.

    “Talking about death is the hardest conversation that families can have,” he says.

    More Than a Medical Decision

    How you want to die is only partly about medical issues, Byock says. It’s also highly personal. And it will mean something different to you than it will to your spouse, your parents, your children, and others. To reach your own definition, Byock advises you take stock.

    “Ask yourself, ‘If I’m seriously ill, what would matter most to me?’” he says. “For the vast majority of us, it’s other people. We are hard-wired to matter to one another.”

    Your conversations, of course, should address practical matters, like life insurance information, how to access your safe deposit box, how to close your bank account — and your Facebook account — and more. Byock recalls how much that meant to him after his mother’s death.

    “She lived alone, we found that she kept a wooden box next to her phone with all the documents we needed,” he says. “Mom was still taking care of us.”

    You will also need to make decisions about key medical concerns. For example, do you want to be kept alive as long as possible, even if treatment causes great discomfort? Or do you prefer care that may allow you to enjoy better quality of life, though your death may come sooner?

    “Some people might worry that they’re not going to get enough treatment, while others might be afraid that they’ll get overly aggressive care,” says Kate DeBartolo, who directs the Conversation Project.

    Another crucial consideration: Who will speak for you if you are not able to voice your wishes? For many people, that may be a loved one, such as a family member, but it does not have to be.

    “I try to encourage my patients to think about who knows them best on their good days and bad days and who is readily available,” says palliative care doctor Christian Sinclair, MD, of the University of Kansas Health System in Kansas City.

    DeBartolo agrees: “I would love to expand the idea that it doesn’t have to be a traditional family member. Ask yourself: Who would you trust, and who do you think could really speak for you?”

    Such a person, known variously as a health care proxy or surrogate or agent, can be given power of attorney to make treatment decisions for you when you can’t make them for yourself. You also can –and should — put your wishes in writing. Legal documents, such as advance directives and living wills, are an alternative or may be used along with a proxy to make clear what you want.

    Sinclair, a co-author of the Institute of Medicine’s 2014 report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, says that over the last 15 years or so, conversations between patients and providers about end-of-life care have become more common as more doctors have been trained for such discussions.

    “Research shows that when these conversations happen and patients and clinicians are on the same page, there’s more likelihood that those patients will actually get the care that they want,” says Sinclair. “Having a good death is about making individual choices.”

    Complete Article HERE!

Struggling to die in peace:

A family fights to turn off a pacemaker

In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible.

By Jennifer Friedlin

For the past month, my mother and I have been advocating for the deactivation of my father’s pacemaker. Yet despite my parents having taken every measure to ensure that they would control the ends of their lives, two months since a severe stroke destroyed whatever quality of life my father, who was already suffering from advanced dementia, had left, his heart continues to beat against my family’s wishes.

In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible. Reaffirmed last year, the statement says, “Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.”

Nevertheless, the team of medical professionals at Parker Jewish Institute for Health Care and Rehabilitation has given us the runaround. Most recently, my mother and I met with my father’s team of medical professionals to discuss moving my father into hospice as well as deactivating the pacemaker so that my father could live out his days naturally. During the course of the meeting, my mother, who is my father’s proxy, made clear that this would be my father’s wish.

According to the law, the request is my mother’s prerogative. In 1990, in Cruzan vs. Director, Missouri Department of Health, the Supreme Court ruled that a competent patient could refuse life-sustaining treatments, including nutrition and hydration. This case gave rise to advance directives so that a proxy could carry out the patient’s will. In a later case, the Court affirmed the right of competent patients to refuse therapy.

The medical team agreed to hospice, but has so far refused to carry out the request to deactivate the pacemaker. We have had several long conversations with the medical team, and, while they seem to agree with our desire to give my father a dignified end, they offer confusing explanations as to why they will not carry out my dad’s wishes.

At one point, a staff member told me that because a pacemaker does not prolong life, we should leave it. But my father’s pacemaker is working 53% of the time to correct his condition, known as bradycardia, which can result in heart failure. I fail to see how this device is not prolonging my father’s life or, at the very least, interrupting the possibility for his natural demise.

We are certainly not the first family to confront the medical community’s refusal to deactivate a pacemaker. Katy Butler, author of “The Art of Dying Well,” has written extensively about her efforts to give her father the death he wanted by deactivating his pacemaker. Butler also uncovered other horrors, such as cardiologists recommending pacemakers for elderly people with advanced dementia.

Much of the motivation, Butler noted, seemed to stem from the financial rewards of treating people, even the terminally ill. Simply put there’s no money in death. And yet in its current design, at $450 a day for room and board alone, institutions like the Parker Institute rake in millions annually from people whose lives are being maintained artificially. The medical system could quite literally bankrupt healthy family members to keep a dying one alive.

Although estimates vary, each year approximately 400,000 people — half over age 75 — get implantable cardiac devices, including pacemakers. Primary care doctors, cardiologists, and elder care attorneys should inform people about how these devices can affect their end of life and encourage them to include their wishes in advance directives.

Yet, even if they do, they may hit the same wall of refusal my family has faced. It seems that despite the legal rulings and the ethicists’ writings, doctors are committed to keeping pacemakers ticking.

It’s unfair to the terminally ill and their families that this view prevails. The refusal to deactivate means the sick family member is denied a dignified death, while the need for constant advocacy leaves family members feeling like they are making an unseemly demand.

As the debate about healthcare builds in the run up to the 2020 presidential election, I hope that the candidates will discuss reforms to improve end of life care. There should be dignity in death for the terminally ill and no healthy person should be forced into bankruptcy to keep a loved one alive against his or her will. There are certain people we should spare no expense to keep alive, in our family’s opinion my father is not one of them.

Complete Article HERE!

Aid in Dying Soon Will be Available to More Americans. Few Will Choose It.

By October, more than one in five U.S. adults will be able to obtain lethal prescriptions if terminally ill. But for those who try, obstacles remain.

By Paula Span

On Aug. 1, New Jersey will become the eighth state to allow doctors to prescribe lethal medication to terminally ill patients who want to end their lives. On Sept. 15, Maine will become the ninth.

So by October, 22 percent of Americans will live in places where residents with six months or less to live can, in theory, exercise some control over the time and manner of their deaths. (The others: Oregon, Washington, Vermont, Montana, California, Colorado and Hawaii, as well as the District of Columbia.)

But while the campaign for aid in dying continues to make gains, supporters are increasingly concerned about what happens after these laws are passed. Many force the dying to navigate an overly complicated process of requests and waiting periods, critics say.

And opt-out provisions — which allow doctors to decline to participate and health care systems to forbid their participation — are restricting access even in some places where aid in dying is legal.

“There are what I call deserts, where it’s difficult to find a facility that allows doctors to participate,” said Samantha Trad, the California state director of Compassion & Choices, the largest national advocacy group for aid in dying.

“We’re nearing a tipping point,” said Peg Sandeen, executive director of the Death With Dignity National Center, which oversaw the Maine campaign. “The issue, while still controversial, is less scary.”

The New Jersey bill had neared passage several times since it was introduced seven years ago, but derailed in 2014 when Chris Christie, the governor at the time, threatened a veto. Finally, legislators passed the Aid in Dying for the Terminally Ill Act this winter, and Gov. Philip D. Murphy signed it in April.

In Maine, the state legislature voted yes this spring, but supporters were unsure what the new governor, Janet Mills, would do. As in New Jersey, a Democratic governor replaced an outgoing Republican who had promised a veto.

Gov. Mills signed the law last month. “I do believe it is a right that should be protected by law — the right to make ultimate decisions,” she said.

What’s changed?

All these laws require states to track usage and publish statistics. Their reports show that whether a state has six months or 20 years of experience, the proportion of deaths involving aid in dying (also known, to supporters’ distaste, as physician-assisted suicide) remains tiny, a fraction of a percentage point.

California, for example, in 2017 received the mandated state documents for just 632 people who’d made the necessary two verbal requests to a physician, after which 241 doctors wrote prescriptions for 577 patients. More than 269,000 California in all died that year.

With such data showing no slippery slope toward widespread use or abuse, “a lot of the hypothetical claims our opponents made no longer carry so much weight with lawmakers,” said Kim Callinan, chief executive of Compassion & Choices.

Ms. Callinan also pointed to changing attitudes within the medical community, once a well funded source of opposition. In recent years, a number of national organizations and a dozen state medical societies have instead adopted neutral stances.

“It levels the playing field a little,” she said.

Opponents, including Catholic organizations and some disability activists, still denounce these laws. In March, an aid-in-dying bill passed the Maryland House of Delegates but failed after a tie vote in the Senate. Opponents are attempting a ballot initiative to repeal Maine’s new law and pursuing a slow-moving court case to invalidate California’s.

Public opinion polls consistently show broad support for aid in dying, however. Compassion & Choices says its upcoming legislative targets include Massachusetts, Maryland again, New Mexico, New York and Nevada.

But the persistently small number of users suggests that most Americans close to death would not personally choose to self-ingest barbiturates, even if they support legalizing that option. The low numbers may also reflect difficulty in actually using these laws.

A recent survey of 270 California hospitals, published in JAMA Internal Medicine, found that 18 months after implementation of the state’s End of Life Option Act, more than 60 percent — many of them religiously affiliated — forbade affiliated physicians to participate.

Compassion & Choices is intensifying efforts to persuade local health care systems, doctors and hospices to agree to consider patients’ requests.

Even aid-in-dying laws long on the books are beginning to draw renewed scrutiny.

For decades, the model has been the first-in-the-nation Oregon law, which took effect in 1997. It requires a terminally ill patient to see two doctors, make two oral requests for a lethal prescription plus one in writing, and face a 15-day waiting period.

Every state law but one incorporates those elements. (In Montana, a court legalized aid in dying, so there’s no statute.)

“There’s too many roadblocks in the existing legislation,” said Ms. Callinan, whose organization has long promoted that legislation. “They’ve actually made it too difficult for patients to get through the process.”

Indeed, a study from Kaiser Permanente Southern California, a health system that supports patients who request and meet requirements for aid in dying, shows that at least a third of those who inquire about it become too ill to complete the process, or die before they can qualify.

Yet states are enacting even more supposed safeguards. Hawaii, whose law took effect in January, requires a 20-day wait; both its law and a proposed Massachusetts law add a mandated mental health consultation.

By contrast, the Oregon legislature recently approved an amendment waiving the waiting period in cases where the physician believes the patient will likely die within 15 days. Gov. Kate Brown has until Aug. 9 to sign it.

Perhaps, Ms. Callinan proposed, aid-in-dying laws shouldn’t require waiting periods.

“It takes people a long time to find a first doctor, to make an appointment, to find a second doctor, to find a pharmacist,” she said. “The process itself is a waiting period,” one often exceeding 15 days.

Since rural areas face physician shortages, Compassion & Choices has also urged that nurse-practitioners and physician assistants be allowed to provide aid in dying in states where they can legally write prescriptions.

In Oregon, a veteran state legislator has taken an even more audacious step toward expanding access.

State Rep. Mitch Greenlick has introduced several bills that would permit those in the early stages of dementia and other neurodegenerative diseases to use aid in dying, securing prescriptions they could then use later as their illnesses progressed.

“You could make the request when you were cognitively able to do it,” he said.

Every existing state law bars that. Those requesting aid in dying must have mental capacity; dementia patients will have lost it by the time they’re within six months of dying. National groups emphatically oppose Mr. Greenlick’s propositions.

Yet those at heightened risk for Alzheimer’s disease, the most common form of dementia, are already well aware of aid-in-dying laws, and some would opt to use them, researchers at the University of Pennsylvania recently reported.

They interviewed 50 older adults enrolled in a drug study, most with family histories of Alzheimer’s, all found to have elevated levels of the biomarker amyloid. “We describe it as an increased but uncertain risk of developing Alzheimer’s disease,” said Emily Largent, a Penn bioethicist.

The team’s interviews revealed that about two-thirds of the group would reject aid in dying and about 15 percent had ambivalent responses. But one in five said they would pursue it if they became cognitively impaired, were suffering or burdening loved ones.

Overall, “very few understood that they wouldn’t be eligible” for lethal prescriptions under current laws if they developed dementia, Dr. Largent said.

But they were strikingly open to legal aid in dying.

“It was important to have it available,” she said. “Even if they felt they wouldn’t choose aid in dying themselves, they weren’t opposed to it for others.”

Complete Article HERE!