Every Adult Should Have an Advance Directive

Despite Recent Well-intended but Misguided Advice to the Contrary

The Sirens and Ulysses by William Etty, 1837

By Richard B. Stuart DSW, ABPP, Stephen J. Thielke MD, George Birchfield MD

Living wills are often the precursors to ADs. More advanced living wills, like the 6-Steps Living Will, help patients clarify their values and formulate personal statements that provide context for treatment decisions. Such instruments express patients’ preference for quantity versus quality of life, the scope of treatment the desire, i.e. aggressive, limited, or comfort care. and which treatments they want to undergo if their quality of life falls below a specified standard. They also include the appointment of an agent who fully understands the patients’ wishes and can serve as an advocate if necessary. These requests are then translated into medical orders that are scanned into electronic medical records. This is very different than being tied to a mast.

Despite the promise of ADs, reliance upon dichotomous “always/never” choices is one major conceptual problem limit in the most commonly used forms such as the POLST. The problem is that life often does not fit into black or white choices. Imagine the following situations.

55 year old Harold has a POLST that stipulates no CPR because he wants to avoid the rigors of a prolonged painful death. But while gardening, he is stung by eight wasps and suffers anaphylactic shock from which he will die unless resuscitated. Should he be allowed to die by following the order? Or should his wishes be over-ridden by an emergency responder who does not know him but believes that CPR could reverse his condition with good effect? The first option creates a moral problem, the second an ethical problem.

75 year-old Edith has a POLST that stipulates that she does wants to undergo CPR. She has just been released from the hospital following a trial of a fourth intravenous cancer drug being administered for an incurable cancer. Due to a medication error, her breathing stopped long enough to result in a high probability of irreversible brain damage. Her surrogate is aware of her desire to undergo CPR if she could return to her prior level of functioning, but not if she would be permanently immobilized and attached to a ventilator. Should caregivers condemn her to a fate she dreaded because of a medical error in accord with her POLST, or should they decide to ignore the order and allow her to die? This time the ethical and moral risks are reversed.

These cases are medically straightforward but ethical and moral issues arise because the orders are incomplete: they do not provide enough information to allow others to make appropriate choices for the patient who is silenced by a crisis.

In both life and medicine, many decisions are more wisely construed as “Always, Sometimes, or Never” choices. Although the POLST denies this realistic option, other tools allow it. The attached Conditional Medical Order (COM) was developed to account for the middle ground. Both Harold and Edith could have stipulated that they wanted CPR on the condition that it would overcome a reversible condition and restore them to their prior quality of life. They could also have stipulated that they wanted to be resuscitated regardless of the circumstances, or that they want to be allowed to die if their heart stops beating for any reason. The POLST leaves the decision in the hands of others who may not know patient’s references in these unforeseen circumstances: the COM allows patients to retain effective control over the care they receive and allows providers to make ethically and morally responsible decisions consistent with patients’ desires.

Nothing in healthcare is perfect. By selecting the “sometime” option, patients do delegate to providers the authority to use clinical judgment to decide whether resuscitation is in the patient’s best interest. But if guided by an awareness of patients’ values, and ideally in collaboration with surrogates, providers can make medically informed decisions about the likely impact of prolonging the patient’s life that accord with what the patient would have chosen.

The standard COM stipulates patients’ preferred scope of treatment, and includes orders for resuscitation, oxygenation, and artificial nutrition and hydration. It can be expanded to include other procedures such as surgery, dialysis, use of antibiotics, hospital transfer, and/or medical aid in dying if legal standards are met. Because it is a medical order, patients must have sufficient capacity to understand it, and it must be signed by a physician, nurse, or certified physician’s assistant. All patients can request a COM which is far the strongest option currently available to allow them to maintain control over one of the most important decisions they will ever make.

An editable COM can be downloaded without charge from: Stuart RB, Birchfield G, Little TE, Wetstone , S, McDermott J. Use of conditional medical orders to minimize moral, ethical, and legal risk in critical care. Journal of Healthcare Risk Management. 2021;(1):1-12. DOI:10.1002/jhrm.21487

See, too: www.6stepslivingwill.org

Stuart RB, Thielke SJ. Standardizing protection of patients’ rights: from POLST to MOELI (Medical Orders for End-of-Life Intervention. Journal of the American Medical Directors Association. 2017 Sep 1;18(9):741-745. doi: 10.1016/j.jamda.2017.04.022. Epub 2017 Jun 13.PMID:28623154

Here is a sample of the way one patient personalized the COM in the words underlined —

Conditional Medical Order

January 30, 2022January 30, 2022

With rising covid cases, young people should consider advance-care planning

By Netana Markovitz

When Jordana Fremed, 26, got engaged, she didn’t think that one of the first serious topics the couple would discuss would be death and dying. But soon after, her fiance’s mother was diagnosed with amyotrophic lateral sclerosis, prompting difficult discussions to plan his mother’s end-of-life care.

Eventually, the couple started talking about wishes for their medical care should they be sick or injured and unable to communicate.

The experience “definitely got us thinking about those questions in relation to what we might want for ourselves,” said Fremed, of Teaneck, N.J.

Medical experts such as Rebecca Sudore, palliative medicine physician and geriatrician at the University of California at San Francisco, say that faced with these numbers, more young people should consider advance-care planning — a process that helps people think through medical decision-making should they be unable to communicate themselves.

“You know the old saying, ‘I could get hit by a bus tomorrow?’ And actually you could,” Sudore said. “And covid has shown us, too, that things are unpredictable. For people in their 20s or 30s who don’t have a serious illness, it could be helpful to think, ‘Well, if I did get hit by a bus tomorrow, who would speak up for me?’ ”

Sudore said she thinks that advance-care planning is an important way for people to participate in their own medical care. “People, particularly in their 20s, can think about advance-care planning as a way to prepare for medical decision-making and really to ensure that people have a voice in their health care, both now and in the future,” she said.

Advance-care planning is an umbrella term that may include completing advance directives — documents that provide written instructions for loved ones and a medical team. They may include specific instructions about which medical interventions doctors can perform — or withhold — such as CPR, mechanical ventilation or artificial nutrition.

Directives can also include broader descriptions of what a person considers a good quality of life, such as the ability to run or spend time with family.

These descriptions can help doctors imagine what a patient would want if they could communicate themselves and determine what medical interventions to offer.

Finally, advance directives often designate an individual to make medical decisions on a person’s behalf, should that person become incapacitated.

“It’s important for every person to think about this topic because unexpected and tragic things happen every day,” said Laura Taylor, a palliative care physician at the University of Michigan. “The pandemic has taught us is that even completely healthy adults can develop serious or life-threatening illness from covid-19, especially with the spread of more virulent variants like delta. And some of those people will require a surrogate decision-maker.”

While less likely to die than older adults, Americans in their 20s and 30s do face risks. The three leading causes of death in adults ages 25 to 34 in 2019 were unintentional injury, suicide and homicide, according to data from the Centers for Disease Control and Prevention. As of Jan. 19, over 5,000 adults between the ages of 18 and 29 in the United States have died of covid-19 since the start of the pandemic, according to provisional data from the CDC. Three hundred per 100,000 adults in this age group have been hospitalized.

In advance-care planning, young adults should first consider who they would want to make decisions on their behalf should they be unable to do so. That person is called a surrogate decision-maker or health-care proxy.

Experts agree that young, healthy adults should worry less about the nuances of medical decision-making, such as whether they would want to be intubated, and instead focus on designating a surrogate decision-maker.

“I think the majority of healthy young adults probably would default to receiving all aggressive, life-prolonging interventions that were offered to them if they were to become seriously ill, so it’s less important for young adults to have a detailed sense of their preferences and wishes,” Taylor said. “For young adults, it’s most important to identify the best surrogate decision-maker who understands that person well and can advocate for them.”

Legally, it might not be who they expect.

“People might assume ‘I want my roommate or my partner to make these decisions for me,’ ” Sudore said, “but it could be some estranged family member because that person is the next of kin.”

“I’m thinking about a young unmarried person who may not have a strong or trusted relationship with their parents, who may not want their parents to be their surrogate decision-makers, but they become their decision-makers by legal default,” Taylor said. “It’s really important for that person to decide who they would want to be assisting in medical decision-making for them if they were unable to.”

After choosing a surrogate, it is important to discuss health wishes together to ensure that the surrogate is comfortable making those decisions. Sudore recommended talking to the person about “what’s important in your life, and for your quality of life, and for your health care, so that this trusted person is really prepared to advocate for you if ever they needed to.”

Sudore is the founder and director of PREPARE for Your Care, an interactive site on advance-care planning. It yields a prepopulated advance directive for a specific location, as the process can vary by state. The documents can be updated at any point, should someone’s wishes or circumstances change.

“We have these easy-to-read advance directives,” Sudore said. “They focus on things like value, goals, what brings quality to somebody’s life, which is probably more important to someone in their 20s than ‘Do you want CPR or mechanical ventilation?’ ”

Olivia Duffield, 24, a medical student at Temple University in Philadelphia, first heard about advance-care planning during the terminal illness of a family member when she was a child. After learning more in a bioethics course, she broached the topic of her own wishes to her parents.

“For me, I think about what would happen if I were to get into a car accident or have a really sudden unexpected event that would cause me to potentially be brain dead or to be intubated in the hospital,” Duffield said.

Sudore said advance-care planning should be normalized for young people.

“When I think about it, it’s a kindness to ourselves in the sense that it gives us empowerment to make sure that our voice is heard if there’s a time that we could not speak for ourselves,” she said. “And it’s a kindness to our loved ones by giving them a little bit of a heads up.”

Fremed agrees: “You kind of always think that you have until tomorrow to do it, but things can happen in a moment. Having your other person know what your wishes are and what you want is just a very smart and healthy thing to do.”

Complete Article ↪HERE↩!

January 30, 2022January 29, 2022

Hard Conversations About End Of Life Wishes

— Should Young Adults Be Included?

By Carolyn Rosenblatt

Talking about one’s end of life wishes is typically uncomfortable for most. We think of the subject as one for our aging parents to have with us when they are “old”. We don’t usually think it is a necessary subject for younger adults to know about. The truth is, many younger adults are already caregivers and they must deal with these issues.

A real life example is that of Anna, a bright and ambitious teenager when her father had to retire from work on disability. Three years later, he passed away. Anna was an only child, living with her mom. The last thing anyone expected was for her mother to have a health issue.

Anna’s mother, Linda had already retired from teaching at a university. She had a pension and some income from rental real estate. She was working part time in the field of education. At only age 59, Linda began to show signs of memory loss. She was diagnosed with early onset dementia and had to stop working. Anna and Linda lived on Linda’s income. Linda’s dementia progressed. At age 21, just graduating from college and starting her career, Anna became the agent and power of attorney for her mother. Eventually Anna had to sell the family home to pay for her mother’s care. Over time, Linda became a behavior problem and Anna had to place her in a care home. Eventually Anna had to sell off her mother’s invested assets to pay for Linda’s increasing care needs. When the money ran out, Linda qualified for Medicaid but then the choices of care for her were extremely limited. Anna found a low cost board-and-care home for Linda two hours away. It took Anna half a day just to make a visit.

Anna was faced with every decision about her mother all on her own. She got advice from time to time at AgingParents.com but it was a huge burden to manage all this while getting her first jobs and establishing her own career. When end of life decisions had to be made Anna did her best to honor what she thought her mom would want. Linda had not ever talked about her end of life wishes with her young daughter. It was a heavy burden on Anna. When the doctors asked her what she wanted to do at decision time for Linda, she was in tears. She guessed, without being sure and it was emotionally wrenching for her.

The Takeaways

None of us are guaranteed a long retirement with our health intact. None of us need let our family members down by failure to discuss what we want in our last days. The struggle to figure out all the things Anna had to do for her mother was an extremely stressful burden. We owe it to our offspring, or others who would have responsibility to assist us in declining health, to be clear about what we want. We use Advance Healthcare Directives, also called Healthcare Proxies or Power of Attorney for Healthcare to give written instructions to our loved ones. That makes it much easier on them when the time comes. When Linda could no longer say what she wanted, due to Alzheimer’s disease, Anna had to try to imagine what Linda would want. The process was traumatic. She did well regardless, and went on years later to have a family of her own. Hard as it is, she will not repeat her mother’s lack of discussion on this important topic with her own child.

If there is one thing to take from this true story, some of which I witnessed personally, it is that any young adult deserves to know the wishes of an aging parent or any parent with a health issue. Linda could have done that upon becoming widowed. There is a free, downloadable version of an Advanced Healthcare Directive available on the internet, from your doctor’s office or your nearest hospital. If any part of it is unclear, a conversation about it with a medical professional can help.

Above all, fill it out and sign it as the document requires, with either a notary or witnesses. With this simple step, you are saving your younger loved ones from conflicts and distress about what to do near the end of your life. And equally as important, take the document out and show it to every adult in your family who will be appointed to carry out your wishes. Make it easier on them at a possibly difficult time. It’s the responsible and caring thing to do. If you need some help, free guides are available at The Conversation Project to get you started.

Complete Article ↪HERE↩!

January 18, 2022January 17, 2022

We Need a New Paradigm for Final Wishes

BY Judith Graham

For decades, Americans have been urged to fill out documents specifying their end-of-life wishes before becoming terminally ill—living wills, do-not-resuscitate orders, and other written materials expressing treatment preferences.

Now, a group of prominent experts is saying those efforts should stop because they haven’t improved end-of-life care.

“Decades of research demonstrate advance care planning doesn’t work. We need a new paradigm,” said Dr. R. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York and a co-author of a recent opinion piece advancing this argument in JAMA.

“A great deal of time, effort, money, blood, sweat and tears have gone into increasing the prevalence of advance care planning, but the evidence is clear: It doesn’t achieve the results that we hoped it would,” said Dr. Diane Meier, founder of the Center to Advance Palliative Care, a professor at Mount Sinai and co-author of the opinion piece. Notably, advance care planning hasn’t been shown to ensure that people receive care consistent with their stated preferences—a major objective.

“We’re saying stop trying to anticipate the care you might want in hypothetical future scenarios,” said Dr. James Tulsky, who is chair of the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute in Boston and collaborated on the article. “Many highly educated people think documents prepared years in advance will protect them if they become incapacitated. They won’t.”

The reasons are varied and documented in dozens of research studies: People’s preferences change as their health status shifts; forms offer vague and sometimes conflicting goals for end-of-life care; families, surrogates and clinicians often disagree with a patient’s stated preferences; documents aren’t readily available when decisions need to be made; and services that could support a patient’s wishes—such as receiving treatment at home—simply aren’t available.

But this critique of advance care planning is highly controversial and has received considerable pushback.

Advance care planning has evolved significantly in the past decade and the focus today is on conversations between patients and clinicians about patients’ goals and values, not about completing documents, said Dr. Rebecca Sudore, a professor of geriatrics and director of the Innovation and Implementation Center in Aging and Palliative Care at the University of California–San Francisco. This progress shouldn’t be discounted, she said.

Also, anticipating what people want at the end of their lives is no longer the primary objective. Instead, helping people make complicated decisions when they become seriously ill has become an increasingly important priority.

When people with serious illnesses have conversations of this kind, “our research shows they experience less anxiety, more control over their care, are better prepared for the future, and are better able to communicate with their families and clinicians,” said Dr. Jo Paladino, associate director of research and implementation for the Serious Illness Care Program at Ariadne Labs, a research partnership between Harvard and Brigham and Women’s Hospital in Boston.

Advance care planning “may not be helpful for making specific treatment decisions or guiding future care for most of us, but it can bring us peace of mind and help prepare us for making those decisions when the time comes,” said Dr. J. Randall Curtis, director of the Cambia Palliative Care Center of Excellence at the University of Washington.

Curtis and I communicated by email because he can no longer speak easily after being diagnosed with amyotrophic lateral sclerosis, an incurable neurologic condition, early in 2021. Since his diagnosis, Curtis has had numerous conversations about his goals, values, and wishes for the future with his wife and palliative care specialists.

“I have not made very many specific decisions yet, but I feel like these discussions bring me comfort and prepare me for making decisions later,” he told me. Assessments of advance care planning’s effectiveness should take into account these deeply meaningful “unmeasurable benefits,” Curtis wrote recently in JAMA in a piece about his experiences.

The emphasis on documenting end-of-life wishes dates to a seminal legal case, Cruzan v. Director, Missouri Department of Health, decided by the Supreme Court in June 1990. Nancy Cruzan was 25 when her car skidded off a highway and she sustained a severe brain injury that left her permanently unconscious. After several years, her parents petitioned to have her feeding tube removed. The hospital refused. In a 5–4 decision, the Supreme Court upheld the hospital’s right to do so, citing the need for “clear and convincing evidence” of an incapacitated person’s wishes.

Later that year, Congress passed the Patient Self-Determination Act, which requires hospitals, nursing homes, home health agencies, health maintenance organizations, and hospices to ask whether a person has a written “advance directive” and, if so, to follow those directives to the extent possible. These documents are meant to go into effect when someone is terminally ill and has lost the capacity to make decisions.

But too often this became a “check-box” exercise, unaccompanied by in-depth discussions about a patient’s prognosis, the ways that future medical decisions might affect a patient’s quality of life, and without a realistic plan for implementing a patient’s wishes, said Meier of Mount Sinai.

She noted that only 37 percent of adults have completed written advance directives, which in her view is a sign of uncertainty about their value.

Other problems can compromise the usefulness of these documents. A patient’s preferences may be inconsistent or difficult to apply in real-life situations, leaving medical providers without clear guidance, said Dr. Scott Halpern, a professor at the University of Pennsylvania Perelman School of Medicine who studies end-of-life and palliative care.

For instance, an older woman may indicate she wants to live as long as possible and yet also avoid pain and suffering. Or an older man may state a clear preference for refusing mechanical ventilation but leave open the question of whether other types of breathing support are acceptable.

“Rather than asking patients to make decisions about hypothetical scenarios in the future, we should be focused on helping them make difficult decisions in the moment,” when actual medical circumstances require attention, said Morrison, of Mount Sinai.

Also, determining when the end of life is at hand and when treatment might postpone that eventuality can be difficult.

Morrison spoke of his alarm early in the pandemic when older adults with COVID-19 would go to emergency rooms and medical providers would implement their advance directives (for instance, no CPR or mechanical ventilation) because of an assumption that the virus was “universally fatal” to seniors. He said he and his colleagues witnessed this happen repeatedly.

“What didn’t happen was an informed conversation about the likely outcome of developing COVID and the possibilities of recovery,” even though most older adults ended up surviving, he said.

For all the controversy over written directives, there is strong support among experts for another component of advance care planning—naming a health care surrogate or proxy to make decisions on your behalf should you become incapacitated. Typically, this involves filling out a health care power-of-attorney form.

“This won’t always be your spouse or your child or another family member: It should be someone you trust to do the right thing for you in difficult circumstances,” said Tulsky, who co-chairs a roundtable on care for people with serious illnesses for the National Academies of Sciences, Engineering and Medicine.

“Talk to your surrogate about what matters most to you,” he urged, and update that person whenever your circumstances or preferences change.

Most people want their surrogates to be able to respond to unforeseen circumstances and have leeway in decision-making while respecting their core goals and values, Sudore said.

Among tools that can help patients and families are Sudore’s Prepare for Your Care program; materials from the Conversation Project, Respecting Choices and Caring Conversations; and videos about health care decisions at ACP Decisions.

The Centers for Disease Control and Prevention also has a comprehensive list of resources.

Complete Article ↪HERE↩!

January 11, 2022January 11, 2022

End-of-life conversations can be hard, but your loved ones will thank you

You can start these conversations simply, like saying, “I need to think about the future. Can you help me?”

By Deborah Carr

Death – along with taxes – is one of life’s few certainties. Despite this inevitability, most people dread thinking and talking about when, how or under what conditions they might die.

They don’t want to broach the topic with family, either, for fear of upsetting them. Ironically, though, talking about death “early and often” can be the greatest gift to bestow on loved ones.

As a sociologist who has studied end-of-life issues for more than two decades, I’ve learned that people know they should talk about death honestly and openly, but surprisingly few do. In fact, one recent study showed that while 90% of adults say that talking to their loved ones about their end-of-life wishes is important, only 27% have actually had these conversations.

It’s frightening to think about our own suffering, or our loved ones’ distress. But everyone should talk about and prepare for death precisely because we want to minimize our own suffering at the end of life, and soften the anguish of loved ones left behind.

No time to plan

These conversations are more urgent now than ever, as the COVID-19 pandemic has changed how Americans die.

For the past several decades, most adults have died from chronic illnesses like heart disease, cancer and lung disease. The time between diagnosis and death for people with these conditions can be months or even years. That gives patients and their families ample time to share their feelings, resolve unfinished business, and make practical preparations for death – including estate planning, advance care planning and even planning a celebration of life that bears the dying patient’s creative imprint.

But when the pandemic struck in 2020, COVD deaths began to occur quickly and unexpectedly, with many patients dying just days after they felt their first symptoms. Their families were robbed of final moments together and often had no documents in place to guide the patient’s health care or the distribution of their possessions. This suddenness, isolation and lack of preparedness all are hallmarks of a “bad death” for both the patient and their family.

What to cover

Advance care planning, which typically involves a living will and a health care proxy, allows people to articulate which medical treatments they want or don’t want at the end of life.

A living will formally articulates preferences for care, such as whether to use comfort measures like hospice and palliative care, or more invasive measures like feeding tubes and ventilators. Documenting these preferences when the patient is still able to make those decisions helps to ensure they die on their own terms – a cornerstone of the “good death.”

Appointing a health care proxy when still relatively young and healthy gives people an opportunity to decide who will be tasked with their end-of-life decision-making. It also clarifies loved ones’ responsibilities and can fend off arguments that could arise around the deathbed. Having these discussions early also prevents panicked choices when someone’s health takes a dramatic turn for the worse.

A woman and her older mother sit on a porch, drinking coffee. — End-of-life conversations can ease suffering for families, not just patients.

End-of-life discussions also help you to construct your own legacy. In “Death and Identity,” a classic book in death studies, sociologist Robert Fulton observed that “preserving rather than losing … personal identity” is a critical aspect of the dying process. Being treated like a “whole person” is a core component of a good death, and honest discussions are a key to maintaining your unique identity, even at the end of life.

Conversations also help us share how we’d like to be celebrated after we’re gone. This might be as simple as dictating the music, food, and photo or video displays for a memorial service; where to spread ashes; or charities for mourners to support. Some people take more ambitious steps at leaving behind a legacy, such as penning an autobiography or leaving behind videos for relatives. Creating a “post-self” that lingers years after the body has died can be a cherished gift to families.

Getting started

Broaching these conversations can be awkward or unnerving, but it doesn’t have to be. Death is a natural and inevitable part of life and should be approached as such. I have argued that the end of life is a stage, just as childhood, adolescence and old age are.

Each stage teaches lessons for the others that lie ahead.

Children learn skills in school that they’ll need to enter the workforce. Teens learn how to navigate romantic relationships as preparation for the future. Adults of all ages can learn about hospice and end-of-life medical care, make preparations for passing on their inheritance and discuss how they’d like to be honored in death. These steps can help attain an end of life marked by peace and self-directedness, rather than strife and the loss of autonomy.

An older Black woman writes as she sits at a dining room table in front of a china cabinet. — Recording memories and ideas for a memorial service can help you craft your own legacy.

Ample resources are available to guide these conversations. Organizations like The Conversation Project – not related to The Conversation – have created guides for productive end-of-life discussions. Advance care planning documents ranging from living wills to the “Five Wishes” program, which helps clarify people’s values about how they’d like to spend their final days, can be a good starting point.

A simple introduction like “I need to think about the future. Will you help me?” is a good icebreaker. And the first conversation eases the path to future chats, because changes in physical health, family relations and mental sharpness may necessitate revisions in end-of-life plans.

By discussing these issues during calm times, such as after a holiday get-together or birthday dinner, we can feel prepared and empowered as we and our families approach the inevitable.

Complete Article ↪HERE↩!

January 7, 2022January 7, 2022

Is It Time to Rethink End-of-Life Decisions and Care?

By Judith Graham
For decades, Americans have been urged to fill out documents specifying their end-of-life wishes before becoming terminally ill — living wills, do-not-resuscitate orders, and other written materials expressing treatment preferences.

Now, a group of prominent experts is saying those efforts should stop because they haven’t improved end-of-life care.

“A great deal of time, effort, money, blood, sweat and tears have gone into increasing the prevalence of advance care planning, but the evidence is clear: It doesn’t achieve the results that we hoped it would,” said Dr. Diane Meier, founder of the Center to Advance Palliative Care, a professor at Mount Sinai and co-author of the opinion piece. Notably, advance care planning has not been shown to ensure that people receive care consistent with their stated preferences — a major objective.

The reasons are varied and documented in dozens of research studies: People’s preferences change as their health status shifts; forms offer vague and sometimes conflicting goals for end-of-life care; families, surrogates and clinicians often disagree with a patient’s stated preferences; documents aren’t readily available when decisions need to be made; and services that could support a patient’s wishes — such as receiving treatment at home — simply aren’t available.

But this critique of advance care planning is highly controversial and has received considerable pushback.

Advance care planning has evolved significantly in the past decade and the focus today is on conversations between patients and clinicians about patients’ goals and values, not about completing documents, said Dr. Rebecca Sudore, a professor of geriatrics and director of the Innovation and Implementation Center in Aging and Palliative Care at the University of California-San Francisco. This progress shouldn’t be discounted, she said.

Advance care planning “may not be helpful for making specific treatment decisions or guiding future care for most of us, but it can bring us peace of mind and help prepare us for making those decisions when the time comes,” said Dr. J. Randall Curtis, 61, director of the Cambia Palliative Care Center of Excellence at the University of Washington.

Curtis and I communicated by email because he can no longer speak easily after being diagnosed with amyotrophic lateral sclerosis, an incurable neurologic condition, early in 2021. Since his diagnosis, Curtis has had numerous conversations about his goals, values and wishes for the future with his wife and palliative care specialists.

The emphasis on documenting end-of-life wishes dates to a seminal legal case, Cruzan v. Director, Missouri Department of Health, decided by the Supreme Court in June 1990. Nancy Cruzan was 25 when her car skidded off a highway and she sustained a severe brain injury that left her permanently unconscious. After several years, her parents petitioned to have her feeding tube removed. The hospital refused. In a 5-4 decision, the Supreme Court upheld the hospital’s right to do so, citing the need for “clear and convincing evidence” of an incapacitated person’s wishes.

Later that year, Congress passed the Patient Self-Determination Act, which requires hospitals, nursing homes, home health agencies, health maintenance organizations and hospices to ask whether a person has a written “advance directive” and, if so, to follow those directives to the extent possible. These documents are meant to go into effect when someone is terminally ill and has lost the capacity to make decisions.

She noted that only 37% of adults have completed written advance directives — in her view, a sign of uncertainty about their value.

Also, determining when the end of life is at hand and when treatment might postpone that eventuality can be difficult.

Morrison spoke of his alarm early in the pandemic when older adults with covid-19 would go to emergency rooms and medical providers would implement their advance directives (for instance, no CPR or mechanical ventilation) because of an assumption that the virus was “universally fatal” to seniors. He said he and his colleagues witnessed this happen repeatedly.

“What didn’t happen was an informed conversation about the likely outcome of developing covid and the possibilities of recovery,” even though most older adults ended up surviving, he said.

For all the controversy over written directives, there is strong support among experts for another component of advance care planning — naming a health care surrogate or proxy to make decisions on your behalf should you become incapacitated. Typically, this involves filling out a health care power-of-attorney form.

“Talk to your surrogate about what matters most to you,” he urged, and update that person whenever your circumstances or preferences change.

Most people want their surrogates to be able to respond to unforeseen circumstances and have leeway in decision-making while respecting their core goals and values, Sudore said.

The Centers for Disease Control and Prevention also has a comprehensive list of resources.

Complete Article ↪HERE↩!

December 21, 2021December 21, 2021

ePOLST Registries: Moving into the Digital Age

Providers should be aware of and be involved in the conversation about these upcoming registries as they will interact with them frequently.

By Jaskaran Singh, MD, Amelia Breyre, MD

You arrive on scene to a call of a 72-year-old woman with metastatic lung cancer who has difficulty breathing at her nursing facility. The woman is unresponsive and thready pulses become difficult to palpate. The nursing facility staff is unable to locate any paper POLST forms. What are your next steps?

The POLST program – Physician Orders for Life-Sustaining treatment – was developed by medical ethicists in Oregon in 1991 as a tool to help honor patients’ wishes for end-of-life treatment.¹ Today, all 50 states and Washington, DC, have existing POLST programs with varying functional capacities and names for the actual form (i.e. Medical Order for Life Sustaining Treatment (MOLST), Physician Order for Scope of Treatment (POST) etc.). POLST forms are most useful for people who are medically frail or seriously ill from chronic, progressive health conditions. They contain important, actionable medical orders that are portable for use across health settings – such as emergency medical services (EMS), emergency departments and long-term care facilities.

Several studies have demonstrated the efficacy of POLST forms over the years. POLST forms have been shown to have significant advantages over traditional methods to communicate preferences regarding life-sustaining treatments,² and their use has been shown to result in a very high percentage of patients receiving care consistent with their prior expressed wishes.³ However, their use is not without barriers. One key barrier can be their inaccessibility. The form, if not readily available to health care providers, isn’t helpful in time-critical situations. A 2004 survey of Oregon EMTs showed a quarter of respondents stated that they were unable to successfully find a POLST in a timely manner the last time they had expected to do so.⁴ In 2009, Oregon legislation introduced an electronic POLST registry. This was to address EMS challenges in accessing or locating original POLST orders when they arrived on the scene of a medical emergency. By 2015-2016, nearly half of all deaths in Oregon had an active form in their electronic registry.⁵ As of 2020, the Oregon Registry has almost half a million POLST forms.⁶

California’s Assembly Bill No. 1234 was introduced by Assembly Member Arambula (D-Fresno) in February 2021 and would require the California Health and Human Services Agency to establish a statewide electronic POLST registry system.⁷ It is being backed by the Coalition for Compassionate Care of California (CCCC) and Arambula, himself, is a prior emergency physician. In addition to creation of a statewide registry, the bill lays out a timeline for its implementation (2024-2026), ensures that an electronic POLST (ePOLST) would have the same legal standing as a paper form, and that electronic signatures could be used.

As of 2020, at least 10 states have started development of or already created statewide registries.⁸ Some registries have capability for electronic form completion, some function simply as databases, and others have a hybrid system. Input from pilot studies that have been performed in San Diego and Contra Costa County along with experiences with ePOLST registries from other states are helping shape what California’s statewide registry will eventually look like.

The current progress of POLST state registries as of April 2021.

ePOLST registries have several advantages over the traditional POLST. The main advantage being their universal accessibility by healthcare providers and patients. Other potential advantages include the ability to provide educational material to patients at time of form completion, development of mechanisms to prevent incomplete or incongruent (i.e. Full Code + Do Not Intubate) form submissions,⁹ and remote signing. However, there are several potential pitfalls to be mindful of – such as assuring the repositories are HIPPA-compliant, easily searchable, interface with local health information exchanges, and have back-up mechanisms for access (i.e. call center) in case of technology failure.

EMS will be at the forefront of interfacing with these registries and as such should be involved in the conversation regarding their development. Properly developed and implemented, a state-wide ePOLST has the opportunity to improve EMS and emergency departments provider POLST access difficulties, facilitate accurate POLST completion, and improve our ability to provide patient’s with the care they want near the end-of-life.

References

National POLST: History [Internet]. Washington DC: National POLST; c2017-2021. [cited 2021, Nov 3]. Available from: https://polst.org/history/
Hickman SE, Nelson CA, Perrin NA, Moss AH, Hammes BJ, Tolle SW. A comparison of methods to communicate treatment preferences in nursing facilities: traditional practices versus the physician orders for life-sustaining treatment program. J Am Geriatr Soc. 2010 Jul;58(7):1241-8. doi: 10.1111/j.1532-5415.2010.02955.x. PMID: 20649687; PMCID: PMC2963454.
Hopping-Winn J, Mullin J, March L, Caughey M, Stern M, Jarvie J. The Progression of End-of-Life Wishes and Concordance with End-of-Life Care. J Palliat Med. 2018 Apr;21(4):541-545. doi: 10.1089/jpm.2017.0317. Epub 2018 Jan 3. PMID: 29298109.
Zive DM, Schmidt TA. Pathways to POLST registry development: Lessons learned. Portland, OR: Center for Ethics in Health Care Oregon Health & Science University. 2012.
Dotson A, Broderick A, Steinmetz V, Weir J, Anthony S. (2019) California’s POLST electronic registry pilot: Lessons for all states. Oakland, CA: California Health Care Foundation. Available from: https://www.chcf.org/wp-content/uploads/2019/09/CaliforniasPOLSTElectronicRegistryPilot.pdf
Dotson, A. (2020). Oregon POLST registry annual report. Portland, Oregon: Oregon POLST Registry. Available from: https://orpolstregistry.files.wordpress.com/2021/03/2020-oregon-polst-registry-annual-report.pdf
Physician Orders for Life Sustaining Treatment forms: registry, Cal. Assemb. B. 1234 (2021-2022)
National POLST: Registry Information [Internet]. Washington DC: National POLST; c2017-2021. [cited 2021, Nov 3]. Available from: https://polst.org/wp-content/uploads/2021/03/2021.03-National-POLST-Registries-Matrix.pdf
POLST California: POLST eRegistry in California: Challenges and opportunities [Internet]. Sacramento: Coalition for compassionate care of California; c2021. [cited 2021, Nov 3]. Available from: https://capolst.org/wp-content/uploads/2020/11/POLST-INTERVIEW-REPORT_11-22-19.pdf

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