Category: Healing and Helping Professionals

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Physician-Assisted Dying…

Even When Legal, Difficult to Achieve

By Roxanne Nelson, BSN, RN

When Maine passes a law allowing physician-assisted dying (PAD), it will be joining nine other jurisdictions in the United States.

By October, one in five Americans (22%) will have a law that allows terminally ill patients, most of whom have cancer, to choose an end to their life with medical help from a doctor.

However, the practicalities of actually doing so are formidable, and patients who choose this option find there are many obstacles in the way.

First is finding a doctor who will participate. Many doctors have moral objections to PAD, refuse to participate, and will not refer patients.

This sounds familiar to Charles Blanke, MD, professor of medicine at the Knight Cancer Institute at Oregon Health and Science University in Portland, who has been participating in PAD since it was legalized there in 1997.

Blanke says patients have told him that after being turned down by their physician, they also were not given a referral; instead, they were told by their doctor that “they don’t know anyone, and good luck finding someone.”

I believe this is patient abandonment.
Dr Charles Blanke

“I believe it is patient abandonment,” Blanke told Medscape Medical News. “For some patients, it takes them months to find me, so it’s no wonder many are too ill by then to proceed.”

In general, eligible patients say that PAD was not offered to them, Blanke said, but he argues that “it is legal and should be put on the table.”

He emphasized that physicians should never be pressured to participate in PAD, but they should refer patients. “We need to make it more patient friendly and more accessible.”

For years, Oregon was the only state that allowed the practice.

In recent years, however, other states have passed similar laws — Washington in 2008, Montana in 2009, Vermont in 2013, California in 2015, Colorado in 2016, Washington, D.C. in 2017, Hawaii in 2018, and New Jersey just a few weeks ago.

Lack of Training

That some doctors do not want to participate in PAD is understandable; many have moral objections to the whole idea, citing the Hippocratic oath to ‘do no harm.’

But there are signs of a shift toward more acceptance.

For instance, a 2018 Medscape ethics report found that 58% of doctors who responded to the survey said physician-assisted death should be available to the terminally ill, similar to 57% in 2016, and up from 54% in 2014 and 46% in 2010.

However, doctors who are willing to participate find it difficult to do so.

“The law makes no provision for medical training, there is no formal system, and I believe that is one of the major barriers and a shortcoming of the law in every state where it is legal,” said Lonny Shavelson, MD, a California physician based in the San Francisco area who specializes in aid in dying. He founded Bay Area End of Life Options in 2016.

“I agree that sometimes there is a moral objection, and there is sometimes institutional resistance, but most commonly it is lack of training,” he said.

Doctors, as a rule, like to do things they’ve been trained in.
Dr Lonny Shavelson

“Doctors, as a rule, like to do things they’ve been trained in and don’t like to do things they haven’t been trained in,” he added.

He noted that his practice has received more than 800 requests for medical aid in dying from different patients throughout California.

“Every patient who comes to us does so because they can’t find another doctor,” he said. “Everyone thinks it’s because of moral objections or that the patients live in rural communities, but it’s not the case for most of the patients.”

Shavelson told Medscape Medical News that he always calls the patient’s doctor, and most of them are not morally opposed to participating in PAD. “But what they tell me is that they’ve never been trained and that they don’t know anything about it. They don’t know what medications to use, or anything about the paperwork or protocol,” he said.

Barriers To Access

“The great news is that we have 22 years of data in Oregon, and the law is protecting patients,” says Kim Callinan, CEO of Compassion & Choices, the largest national advocacy group for aid in dying.

“But we also have robust data showing that the law is not meeting its intentions and that we have erected too many barriers for many to access it,” she told Medscape Medical News.

Callinan believes that improvements are needed to allow the original intention of the law to take place. “We want to keep the right safeguards in place,” she said. “But we are seeing such small numbers of people using it, and in many cases it’s because they can’t get access.”

Recent reports confirm that the number of patients who have chosen PAD — and who have completed the process — remains small.

For example, data from Oregon show that from 1997–2018, prescriptions have been written for 2217 people, and 1459 patients have died from ingesting the drugs.

In California during a single year (2017), 577 individuals received prescriptions and 374 people died after ingesting the medication.

Shavelson feels the actual demand for PAD is not reflected in the current statistics, and the numbers would probably be much higher if there was more access to physicians.

He argues that a more accurate survey would be to identify how many patients have requested PAD but could not find a physician to help them, he said. Shavelson believes that number would be significantly higher than what has been documented.

Institutional Barriers

In some cases, it is not the physician making the decision but the healthcare system.

A recent survey of 270 California hospitals, conducted 18 months after implementation of the state’s End of Life Option Act, found that 61% of hospitals had a policy forbidding physicians to participate (JAMA Intern Med. 2019;179:985-987).

“We found that of the 164 hospitals in California that opted out, 56% allowed physicians to refer patients to another provider and 29% of hospitals did not provide any guidance on this question,” said lead author Cindy Cain, PhD, assistant professor in the Department of Sociology at the University of Alabama at Birmingham.

“I support the idea that a health system can opt out,” says Peg Sandeen, PhD, MSW, executive director of the Death with Dignity National Center, a nonpartisan, nonprofit organization. “As much as I don’t like it, and think physicians should be free to practice, the health system has that right to do so,” she said.

However, not referring patients is an entirely different issue. “The outright act of refusing to refer a patient puts the physician into an ethical quandary,” she said. “Referral is part of how medicine is practiced, but it is up to the individual physician to make that determination.”

Waiting Times Present Another Barrier

The whole PAD process requires two oral requests with a waiting time of at least 15 days between them, and also a written request using the statutory form included in the state’s aid-in-dying law.

There are slight variations among states (eg, Washington, DC also requires two witnesses). Many states also require a second waiting period, in which the physician must wait 48 hours from the time of receiving the written request to write the prescription.

Callinan believes that the waiting periods, as well as the need for two doctors to confirm eligibility, are redundant in some cases. “The eligibility is that a patient has 6 months or less to live, and 2 doctors have to certify that,” she said.

“But if someone is already enrolled in hospice, as many are, it has already been determined that they meet the 6-month criteria and that the decision has been made to forgo treatment. In this case, they should only need one doctor to authorize it,” she argues.

A new law in Oregon may cut some of the waiting time, as it allows physicians to make exceptions to the waiting periods if the patient is likely to die before completing them.

“Oregon law has not evolved since it was written 20 years ago,” said Blanke. “This new bill will eliminate the waiting period for those who are imminently terminal. It won’t affect very many people, but it will help a few get quicker access.”

Shavelson praised the new Oregon law. “I think the 15-day waiting period is obscene because it’s not 15 days,” he said, explaining that it may be more like 3 or 4 months, as patients have to find a doctor and then may have to wait weeks for an appointment.

“The idea was that it was supposed to be a period of contemplation, but many patients have been contemplating since they got their diagnosis,” Shavelson pointed out. “They didn’t start thinking about it when they first made their request — they have been thinking about this for a long time.”

Patients in this waiting period may be dying or losing the mental and/or physical ability required for self-administration of the drugs, he explained. In his own clinical practice, about 30% of patients die during the 15-day waiting period, he estimates.

This is a similar proportion to that found in recent study from Kaiser Permanente Southern California, where one third of patients became too sick or died before the process was completed (JAMA Intern Med. 2018;178:417-421).

Accessing and Taking the Drugs

Even for patients who do manage to get through the bureaucracy, there are challenges in the practical steps of actually obtaining the drugs. A physician can only write the prescription and it is up to the patient to procure the drugs.

When states began to first legalize PAD, the drugs of choice were oral pentobarbital and secobarbital. However, as of 2015, both of these drugs have been largely unavailable, as previously reported by Medscape Medical News.

Through trial and error, a group of physicians eventually developed a drug regimen (DDMP2), which contains diazepam 1 g, digoxin 50 mg, morphine 15 g, and propranolol 2 g. It is more complicated than the barbiturates but has been found effective.

Shavelson explained that an updated version known as D-DMA (no propranolol and amitriptyline 8 g added), which is both faster and more reliable than all other protocols, is in the process of replacing DDMP2.

Both formulations are compounded by a pharmacist and available as a powder, which then must be mixed with 4 oz of apple juice and taken as a liquid/suspension.

Shavelson noted that physicians may not know where a patient can fill the prescription.

“It’s not something that can be filled at the local CVS or Walgreens,” he said. “A regular pharmacy doesn’t have the ingredients on hand, and for the DDMP2 combination, it has to be compounded.”

In California, two pharmacists currently fill about two thirds of the prescriptions. “Pharmacists need training as well,” Shavelson contends. “They are an integral part of this process.”

Even the last step in the whole process, the actual ingestion of the drugs, can be difficult for some patients.;

State law requires that the lethal dose be self-ingested via the digestive tract (orally or through an nasogastric (NG) or gastrostomy tube). The restriction that the drugs must be self-administered was to help ensure no one could harm a patient against his or her will.

However, many terminally ill patients are so sick they can’t physically mix the solutions, pick up and take the medicine, or swallow the drugs. Blanke estimates that around 10% of the patients he has evaluated have swallowing issues, and they fear that they will be unable to swallow the medications when they are ready to die.

To get around these practical difficulties, a proposed bill in Oregon sought to allow patients to self-administer intravenous drugs.

“There are many people who cannot swallow or administer through an NG tube, so just pushing the button on a pump syringe would allow them to take the medication,” said Blanke. “The IV could be put in right before they used it.”

Putting in an IV is easier than an NG tube, he explained, and much less invasive than a gastrostomy tube. “There’s really no difference between them, as far as putting medication in,” Blanke said. Both require some intervention and hold the same risk that someone else can administer the drugs.

Although the bill passed through the Oregon House of Representatives, it stalled in the Senate and has not moved forward. Some opponents of the bill feared that it would move Oregon closer to allowing euthanasia, while others cited the high cost of pump syringes.

Blanke believes that much of the opposition was really directed at the concept of assisted dying. “The arguments were with Death with Dignity,” he said. “Not the idea of making changes in the law or the use of an IV.”

The practical difficulties of PAD in the United States contrast with a much simpler process in Canada. Since 2016, Canada has legalized medical assistance in dying, which allows for both physician-assisted euthanasia and self-ingestion of a lethal dose. Patients have overwhelmingly selected physician-assisted euthanasia, where the lethal dose is administered intravenously by a clinician. According to Health Canada, of the nearly 7000 Canadians who have chosen to end their lives since the law went into effect, only six people have opted to self-administer drugs.

Physician Education and Training Needed

The biggest barrier — and the most imperative need — is physician education and training in PAD, argues Shavelson.

“Traditionally, teaching happens at large institutions, medical schools, universities, academics — but they won’t touch this,” said Shavelson. “They don’t want their reputation so-called ‘sullied,’ and are frightened that their reputation will take a hit. I don’t think that’s true, and I think people would feel that it’s a good thing to have medical centers more involved in this.”

Academia has fallen down on their responsibility, he contends. “This is a legal medical procedure and there is not one medical institution in my state [California] that is doing formal training on this. It’s not part of any conferences or any continuing medical education.”

As an example, the University of California, San Francisco, forbids palliative care residents and fellows from participating in aid-in-dying practices. The end result is that there are palliative care fellows coming out of training who have no experience in this area.

“Their patients will be asking about it, since palliative care doctors get asked about it more than any other specialty except for oncology,” said Shavelson. “So we will have palliative care and hospice doctors who have no training in it, and that’s absurd. This is part of the realm of what they are going to have to deal with in their practice, and institutions have forbidden it.”

However, next year the first conference for clinicians on medical aid in dying will be held in Berkeley, California, and will really delve into the nuts and bolts of practicalities, Shavelson explained. “The topic has come up at conferences, and there have been other gatherings to discuss it, but the focus has been on policy and ethics.”

This new meeting, called the National Clinicians Conference on Medical Aid in Dying, will provide an opportunity for clinicians to learn about bedside practices and share information.

“We need this clinical conference,” Shavelson added. “We are going to make education happen.”

Complete Article ↪HERE↩!

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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.

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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.

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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.

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Docs No Less Likely to Die in Hospital Than Other Patients

By Nicola M. Parry, DVM

With respect to end-of-life care, physicians’ likelihood of dying at home is similar to that of nonphysician patients, a Canadian study suggests.

“Overall, they did not consistently opt for less-aggressive care but instead used both intensive and palliative care more than nonphysicians,” Hannah Wunsch, MD, from the University of Toronto, Canada, and colleagues write in an article published online July 24 in JAMA Network Open.

Intensive end-of-life treatment is common in North America, often going against patients’ previously reported preferences. Previous studies have suggested that physicians in the United States are somewhat less likely to die in the hospital than other patients, suggesting they may be better able to match their care with their preferences.

To see if that pattern held true in a system with universal healthcare, Wunsch and colleagues compared the intensity of treatment received by physician and nonphysician patients at the end of life in Ontario, Canada.

“The primary outcome was location of death, with the hypothesis that physicians are more likely to receive less-intensive end-of-life care,” the authors write.

The researchers analyzed medical and death records of 2507 physicians and 7513 nonphysicians who died between 2004 and 2015.

They found that physicians were no more likely to die at home than nonphysicians (42.8% vs 39%; adjusted relative risk [aRR], 1.04; 95% confidence interval [CI], 0.99 – 1.09). However, physicians were more likely to die in an intensive care unit (ICU) (11.9% vs 10%; aRR, 1.22; 95% CI, 1.08 – 1.39).

The data also showed that, in the 6 months before death, physicians were less likely to visit an emergency department (73% vs 78.4%; aRR, 0.96; 95% CI, 0.94 – 0.98), but more likely to be admitted to an ICU (20.8% vs 19.1%; aRR, 1.14; 95% CI, 1.05 – 1.24), and to receive palliative care (52.9% vs 47.4%; aRR, 1.18; 95% CI, 1.13 – 1.23).

However, a subgroup analysis of patients with chronic conditions showed that physicians (n = 1375) were more likely to die at home than nonphysicians (n = 4117) (35.2% vs 30.7%; aRR, 1.12; 95% CI, 1.04 – 1.22). Among those with cancer in this subgroup, physicians were also more likely to die at home (37.6% vs 28.6%; aRR, 1.30; 95% CI, 1.13 – 1.50), and to receive chemotherapy in the last 6 months of life (37.9% vs 29.8%; aRR, 1.28; 95% CI, 1.13 – 1.46).

In an interview with Medscape Medical News, study coauthor Robert A. Fowler, MDCM, MS(Epi), also from the University of Toronto, was struck by how his group’s findings differed from the US studies.

“We wondered whether this might relate to differences in payment systems for healthcare services in the United States, in comparison to Canada where we have a theoretically universal healthcare system for in-hospital care, yet often have more limited options for home-based and palliative care at end of life.”

Overall, Fowler expressed surprise at the findings of both the US and Canadian studies — “chiefly, that many elements of end-of-life care are, despite some differences, remarkably similar among physicians and the general population.”

 

This was different from his group’s original hypothesis that physicians would opt for much less inpatient care.

“It was interesting that we did see that physicians were both more likely to receive treatment in an ICU, known for its use of technology-laden care,” he added, “and also more likely to receive palliative care at the end of life.”

According to Fowler, this offers a more nuanced perspective of what physicians may perceive to be optimal care at the end of life, as opposed to a simplistic notion of ‘more’ or ‘less’ being better: “Sometimes, more aggressive care is warranted,” he said, “yet, at other times, focusing more squarely on comfort is best.”

Complete Article ↪HERE↩!

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I’m an ICU nurse. I know I need an end-of-life directive.

So why can’t I bring myself to write it?

By Andrea Useem

I of all people should know how to do this. As an ICU nurse, I see every day how agonizing it is for families to make end-of-life care decisions for loved ones who have not made their wishes clearly known. I know what I want. I know what the legal options are. But when I sit down to fill out the papers, I stall.

The form remains incomplete.

All of my experience urges me to act. I think of the anguished adult son trying to decide whether his elderly, unconscious mother would want to live permanently connected to a ventilator.

“Pray for me that she dies before I have to make a decision,” he told me. If she had made her choices known before medical calamity struck, her son would have the peace of mind of carrying out her wishes, one way or another.

I think of another family, where two siblings — one of them a physician — came to blows in the hospital waiting room because they could not agree on whether to stop aggressive treatment for their father, given that his organs were shutting down, one by one.

Of course I want to reduce what’s called the “decisional burden” on my own family by making my choices clear in case I become too sick some day to decide for myself. I just can’t bring myself to translate my well-informed preferences into a legal document such as an advance directive.

I’m not alone. Although advance-care planning has other well-established benefits, including an increased chance that patients will receive the care they want, only one-third of Americans have any sort of advance directive, according to a 2017 study led by researchers at the University of Pennsylvania.

And health-care professionals like myself are no exception. In her 2017 book “Extreme Measures: Finding a Better Path to the End of Life,” physician Jessica Nutik Zitter explained why she avoided the task of translating her medical wishes into a series of yes/no check-boxes that make up many advance directive forms.

“My feelings are too complex, too nuanced, to fit into one little white square,” wrote Zitter, who is board certified in both palliative care and critical-care medicine.

So why is this undertaking so difficult? And how can we all get better at completing this vital task?

The first barrier to advance-care planning is often understanding what is involved. According to G. Kevin Donovan, director of Georgetown University’s Pellegrino Center for Clinical Bioethics, an advance directive is a document that usually includes two separate elements: naming a health-care surrogate and creating a living will.

A health-care surrogate or “proxy” is an adult who is legally empowered to make medical decisions for you when you can’t make them for yourself. Many think they have this base covered when they name a durable power-of-attorney. But a power-of-attorney directive does not automatically allow for decision-making power in the health-care realm.

“They can sell your stock, but they can’t take you off a ventilator,” Donovan said.

A living will offers you a way to say in advance what sorts of medical interventions you would want. For example, the form we offer at our hospital asks whether you would want “artificial nutrition” — meaning liquid nutrients delivered through a tube — if you were expected to die soon.

The problem with these forms is that they rarely capture the complexity of real-life medical decision-making, Donovan said.

In the intensive care unit where I work, we recently had a woman in her 60s whose cancer had come back with a vengeance. She was awake and talking with her family, but her vital signs were deteriorating quickly. We asked the patient and the family what they would want if she could no longer talk and make decisions, and they requested an advance directive form.

When I came to check on them later, I found the patient and family puzzling over the form’s questions, such as what kind of care she would want if she were in a “persistent vegetative state.” The abstract scenarios were almost irrelevant to their immediate situation.

I redirected the conversation to the concrete choices in front of them: Would she want a breathing tube put in her throat in the next 24 hours when her lungs began to fail? Or to have a large IV inserted in her neck to start dialysis after her kidneys stopped working? Thankfully for the family, the patient made her own decisions and shared these with our physicians. She said she didn’t want any “heroic” interventions, and she died 48 hours later, with her family at her bedside.

To me, filling out a living will as a relatively healthy person feels like ordering food for a meal I will eat in 20 years: It seems impossible to predict what I will want in that moment. Is it good to be vague and write, “I want to be kept comfortable?” Or better to be highly specific and say, “I never want to have a feeding tube inserted?”

Because living wills are difficult to translate into real-life decisions, many experts now advise focusing on not only naming the right person as your health-care decision-maker but also talking in depth with that person about what’s important to you.

“The best advanced directive is to name an educated person as your health-care surrogate,” said Douglas Houghton, an acute-care nurse practitioner and director of advanced practice providers at Jackson Health System in Miami. “You need to have a real conversation with that person, and not simply write down a name on a piece of paper that you keep in a filing cabinet.”

Zitter agreed that having conversations with loved ones is vital.

“A written document is a good first step, but it’s not the ultimate goal,” said Zitter, whose work around end-of-life decisions was profiled in the 2016 Netflix documentary, “Extremis.” “For me, the real work happens on Friday nights at the dinner table, when I talk with my family about illness, and death and what I would want at the end of my own life, even when my sons are rolling their eyes.”

But Zitter conceded that a major barrier stands in the way of these conversations: a fear of talking about death.

“Even for me, as a doctor who deals with death every day, I don’t want to think about my own end, it makes me very sad,” she said.

So what can help us all climb over this final existential barrier to end-of-life planning?

I recently witnessed a conversation at work between a palliative care doctor and a patient with severe heart failure, whose adult son and grandchild were at the bedside. The doctor gently reminded the patient that if she could give her preferences now while she was conscious, she would relieve the burden on her son, who otherwise would have to make hard decisions on her behalf. When she finally said she wanted to go home with hospice, her son was visibly relieved.

Framing end-of-life planning as a service to loved ones is a compelling idea. One critical-care doctor I work with suggested we link advance directives to Valentine’s Day. Show your love by sharing what you want. This idea is also what finally motivated me to overcome my own hesitations.

This month, I finally filled out “Five Wishes,” a downloadable document, where I named a health-care proxy and two backups. I wrote I don’t want to artificially prolong my life with machines, such as a ventilator, and if such treatments are started, I want them stopped. I had two neighbors witness the document, making it legally binding in Virginia, and placed it in our kitchen filing cabinet.

Talking about my wishes over dinner with my kids? I’m not there yet. Meanwhile, let me share my advance directive here, so at least my kids can Google it: When the time comes, keep me comfortable, let me go and know that I love you.

Complete Article ↪HERE↩!

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What’s healthy dying?

6 steps on the path for doctors to know

By Timothy M. Smith

Most Americans die in hospitals, but acute care settings are by default focused on saving lives and therefore struggle to deal with death as something other than the unfortunate outcome of having no interventions left to try. An expert in end-of-life care notes that death is an essential part of life for patients and their families and suggests several steps physicians can take to make death a “healthy” experience.

For starters, Chapple said, one should acknowledge that the aim of acute care settings is to rescue patients, to avoid death at all costs.

“If there is an intervention to try, that’s what we’re going to do,” Chapple said, noting that this urge is reinforced by health care payment mechanisms, as well as by family members’ anguish. “So, it’s very difficult to move in a different direction. It’s like a train that you can’t jump off of.”

Trying everything, however, can undermine our cultural and clinical capacity to acknowledge the importance of dying, Chapple said. She suggested taking the following steps to reinforce the concept of dying in a healthy way.

Focus on patient safety and autonomy. “I worry that patients are overmedicated or undermedicated, that we’re not reacting to what’s really happening to the patient,” Chapple said. “Healthy dying is when patients themselves get to choose the agenda and get to take their own time—as long as they’re not suffering at all, or they appear not to be suffering—and we all just take their timetable and let it happen.”

Acknowledge death as a part of life. This begins with making the most of what Chapple called the “critical present” by suggesting that family members take time to reflect on the patient’s life. “It’s sort of antithetical to the way acute care is set up, which is doing all the time, rather than being, rather than existing and noticing the existential significance of where we are right at this moment,” she said.

Reset loved ones’ expectations. In critical care, Chapple often tells families, “This person has never died before, and this is our chance to make it the best dying they can possibly have.” She suggested preparing family members for what might happen logistically, such as transferring the patient to a step-down unit, and noting that the active dying phase can last several days.

Encourage family members to talk to patients. Hearing is thought to be one of the last senses to go in dying patients, so it may help to share memories. “Families may not talk to each other because they think the family knows all the stories,” she said, so members of the care team can help initiate this by asking about significant events in the patient’s life.

Note the importance of religious rituals. Ceremonies, prayers and songs can help make this time meaningful too.

Suggest loved ones say goodbye in their own ways. Let family members know the following, Chapple suggested: “If you want to … say to the person something that you’ve always wanted to say and never had the opportunity or you certainly want them to know before they die, this is the time to do that.”

Complete Article ↪HERE↩!