End-of-life Planning

— Why to Start Young

You’re too busy and alive to think about death when you’re young. “It always seems too early, until it’s too late,” declared the National Healthcare Decisions Day a few years ago. You want medical insurance for a sudden illness or injury. You ask our employer and government to offer retirement benefits to retire well. What about your hope to die well? Although you can’t control your future, you can plan for it.

By Sharleen Lucas, RN

End-of-life planning – also known as advance care planning – gives you a powerful voice if illness or injury leaves you unable to speak for yourself.

Hard to imagine, right? A day when an illness or injury steals your ability to make decisions for yourself. When you’re young and buzzing through your days of hard work and fun, death is an abstract, nebulous, and distant concern. Until a pandemic hits. Or you walk away from a nearly fatal motorcycle accident. Or your first child is born. Suddenly, death creeps closer and these moments make you think a little harder about life and death.

In 2020 according to the Centers for Disease Control and Prevention, unintentional injury was the leading cause of death for 15 – 44-year-old Americans. No one knows what tomorrow brings, as the old saying goes.

But wait, isn’t thinking about death harmful to young people?

There’s no getting around it. When you plan for end-of-life care, you have to think about death.

I asked palliative care psychologist Dr. Dwain Fehon if it’s mentally healthy for young people to complete advance directives. As Associate Professor, Chief Psychologist, and Director of the Behavior Medicine Service for the Yale School of Medicine and Yale New Haven Hospital, Dr. Fehon has worked with countless patients of all ages facing mental and terminal illnesses.

His answers were enlightening. “When we can talk openly about difficult topics early in life, it’s just so healthy and helpful,” he expressed in his soft, kind voice. “It allows you to formulate ideas and to take in the thoughts and opinions of others so that you’re not alone or isolated with your thoughts or fears.”

There’s certainly evidence to support his words. When it’s explained correctly, most younger people want to talk about end-of-life issues.

In 2022, the American Journal of Hospice and Palliative Care published a study of young people’s perspectives on end-of-life planning. The researchers talked with 30 white and Black participants. They found that 87% of them were comfortable talking about the subject and wanted to make their own end-of-life decisions. Even though the sample size was small, this research is consistent with other studies.

A study published in 2019 found that young adults welcomed the chance to discuss advanced care planning. They even wanted more information about it. Researchers found a significant improvement in their “self-perception of comfort, confidence, certainty, and knowledge” about death planning. They recommended more end-of-life talks with young people.

When you’re in your 20s and 30s, paving your path and making your own choices are top values. Planning for death empowers you to voice your opinion about the medical care you want if you can’t speak for yourself.

In 2015 researchers published findings from their end-of-life discussions with 56 young people between the ages of 18-30. They found each subject felt death planning was a valuable way to express their individuality. They also liked that advanced care plans can change and grow as they did.

Surprisingly, most young and healthy people are willing and even eager to talk about death planning.

“It’s interesting, thinking about death gets you thinking about life. There’s value in thinking about these things, and when we can think about it, it helps to reinforce a general acceptance within ourselves that death is a part of life. And it’s okay to talk about. It’s not a taboo topic that needs to be kept quiet.” — Dr. Fehon

His words reminded me of the young, healthy mortician Caitlyn Doughty, who founded the Death Positive Movement in 2011. Her goal is to help people of all ages break their silence about death. Topics kept in the dark create more confusion, robbing people of their power to understand the issue and make their own choices about it.

Death planning is actually about life

Dr. Fehon’s wisdom here continues. “In the palliative care world, we have a concept called double awareness,” he told me. “One component is life engagement, and the other component is death contemplation. The idea is to hold these two concepts in our lives. We can contemplate death and still be engaged in life.”

The lightbulb lit up in my head. Death contemplation can engage us deeper into life. This is why many young people like it. The young participants in these studies had the chance to clarify what they want from life now and in the future.

But if we think about end-of-life plans and find ourselves disengaging from life, something’s wrong. We may be overly preoccupied with dark fears or sadness about death. In these bleak moments, we’re likely isolating ourselves from loved ones or others who can help us with the process.

End-of-life planning is a process that involves your loved ones. They need to know what decisions you’d like them to make if you can no longer speak for yourself. So, no one should go through the process alone.

Alright, I’m convinced. But how do I start end-of-life planning?

We can sum up the process into three steps.

  1. Complete your advance directives and make them legal.
  2. Post them openly in your home and give them to loved ones and your doctors.
  3. Talk about them with your health proxy, your loved ones, and your medical team.

What are advance directives?

Advance directives are the documents that make your choices legal. These documents include a living will and a power of attorney for health care.

A living will describe the type of end-of-life medical care you want in certain situations. It directs and guides your chosen decision-maker and medical team to make decisions for you. Your instructions in the living will, can be as creative as you want.

These directives are kind to your family. Instead of agonizing over medical decisions without your input, they can more confidently and peacefully make the right decisions for you.

A power of attorney for health care legally names the person you want to make your healthcare decisions when you cannot. This decision-maker is also called a health proxy. They become your voice when you can’t speak for yourself.

Your advance directives are yours to define and only become active when you are suddenly, by illness or injury, unable to make your own decisions.

Where do I get the paperwork?

For a paper copy, start with your doctor’s office or the closest hospital. They often stock advance care paperwork that meets your state’s standards.

Not surprising, there are many online options to suit your needs. These sites are a great place to start because they help you think about your end-of-life wishes and answer a lot of questions. Some are free, and some cost as little as five dollars. You can get trustworthy free documents at CaringInfo, MyDirectives, and Prepare for Your Care.

But these details only scratch the surface. Planning can feel overwhelming, but don’t let that stop you. Push through for the sake of your life now. For the sake of your loved ones.

If it gets hard to talk about or feels too complicated, consider talking with a local palliative care social worker or chaplain. End-of-life doulas also help people safely talk about death and advance care plans.

Remember, death planning is about life. Let these words from Dr. Fehon guide you. “What does living well mean now [to you]? Whatever your circumstances, whether you’re healthy or not, [end-of-life planning] is a recognition of what’s important and to try to live in a way that is in alignment with your values, your priorities authentically.”

Complete Article HERE!

What’s the difference between a POLST form and an advance directive?

By Lyle Solomon

Important terms

Advance directive: An advance directive is a document specifying who will make medical choices on the patient’s behalf if and when they become incapable of doing so. This document is also called a “health care power of attorney.”

POLST form: A Portable Medical Orders form, or POLST, is a list of medical directives that only apply to a specific patient population and deal with a small number of crucial medical choices.

Question: What’s the difference between a POLST form and an advance directive?

Answer: An advance directive is not a replacement for a POLST form, nor are POLST forms an alternative to an advance directive. However, when appropriately used, advance directives and POLST forms are helpful as advance care planning tools for expressing patient preferences.

An advance directive specifies who will make medical choices on the patient’s behalf if and when they become incapable of doing so. This document is also called “health care power of attorney.” It also offers direction or instructions for choosing medical care, usually in cases involving end-of-life care, and is also referred to as a “living will.” An advance directive is not a medical order but a directive or an authoritative instruction from the patient.

A POLST form, in contrast, consists of a list of medical directives that only apply to a specific patient population and deal with a small number of crucial medical choices. The form is meant to be used in conjunction with advance directives because it ensures continuity of care and acts as a translational tool.

An advance directive, sometimes known as a living will or health care power of attorney, is used to specify the types of treatments a patient may desire to receive in the event of a future, unforeseen medical emergency. It also allows patients to name a surrogate, and this is something every adult should have.

The POLST form is a portable medical order for specific medical care the patient would need immediately, depending on their diagnosis, prognosis and care goals. It has different names in different states, and POLST forms are suitable for people close to the end of their lives and with a severe illness or frailty.

POLST forms are suitable for people close to the end of their lives and with a severe illness or frailty.

It’s highly recommended the patient has an advance directive in place before requesting a POLST form. If patients participate in a POLST conversation, they can probably choose a surrogate. A POLST form can only be created, modified or revoked by the surrogate the patient specified in their advance directive if they ever lose the ability to make decisions themselves.

Complete Article HERE!

Advance directives: A new look at future health care wishes

An advance directive is a voluntary, legal document that articulates an individual’s wishes regarding future medical care and treatment.

By Gloria Brigham, EdM, MN, RN

As highlighted during the COVID-19 pandemic, individuals have preferences about their life and future. These preferences arise from values, cultural norms, knowledge and available information. They are influenced by past experiences and the consequences of previous decisions. Periodically, preferences change.

Health care planning for the future is important to ensure that your wishes are known and followed when you are unable to speak for yourself. Sharing what matters to you most (in writing) is one way to clearly communicate with loved ones and health care providers.

What is an advance directive?

An advance directive is a voluntary, legal document that articulates an individual’s wishes regarding future medical care and treatment. It is valid from the time of completion until the end of life. In Washington state, there are two types of advance directive that can be completed by adults 18 and older:

  • Durable power of attorney for health care – The durable power of attorney for health care is also called a medical power of attorney or health care agent. This is an individual that you choose to make health care decisions (on your behalf) if you are unable to make them for yourself. The health care agent cannot be under 18 years old, your health care provider or an administrator/employee of a health care facility where you receive care or live.
  • Health care directive – A health care directive is also referred to as a living will. This written document includes the type of medical care and treatment that you wish to have near end-of-life, if any. This document informs health care professionals of your preferences in the event of an accident or life-threatening illness when you are unable to speak for yourself.

Who should complete an advance directive?

It is advised that everyone over the age of 18 have an advance directive. The reality is that no one knows when an event might occur that renders us incapable of making our own decisions.

How is an advance directive completed?

Fill out advance directive forms found on the Honoring Choices Pacific Northwest website1. An attorney is not needed for an advance directive. Once your advance directive forms are complete, they are legally valid when notarized or signed by two “disinterested” witnesses. Witnesses must be 18 years of age and cannot be related to you by blood or marriage and cannot be your attending provider or an employee of your provider or the health care facility where you are a patient or receive care.

How is POLST different from an advance directive?

According to the Washington State Medical Association, Portable Orders for Life-Sustaining Treatment (POLST) is a medical order that addresses emergency care wishes for seriously ill individuals. POLST is not for everyone. It is intended for individuals in poor health who want to have the choice not to pursue selected treatments in response to a health emergency2.

Inspiring individuals to complete an advance directive supports individual choice and autonomy regarding personal care preferences at end of life. Once complete, advance directive copies are provided to the people close to you, such as your health care agent, loved ones, and your health care providers. If advance directive changes are necessary, share those changes and provide an updated copy of the advance directive to those that matter to you. For additional information visit www.honoringchoicespnw.org.

Complete Article HERE!

Should You Get a POLST?

These portable medical orders give the seriously ill more control over their care

Blake Anderson, 64, lives with numerous medical conditions, including chronic back pain, the rheumatic disease ankylosing spondylitis, other autoimmune conditions affecting his tendons and nerves, and non-Hodgkin lymphoma, a lymphatic cancer. But although he is disabled and in pain, he says he deeply values life and has no wish to end his.

Residing in a board-and-care facility in Carlsbad, California, he has good friends and enjoys reading, conversation, learning new things and traveling the world via the Internet. But he also has a POLST form, signed by his doctor, spelling out the treatments he would not want to receive in the event of a medical crisis in which he could no longer speak for himself. Were his heart to stop beating, he would not want medical personnel to try to resuscitate him.

POLST is a medical form completed by a doctor, nurse practitioner or physician assistant in consultation with the patient. It allows people with serious or chronic illnesses or the frailties of age to spell out what kinds of medical care they would want to be given in potential future medical emergencies.

Unlike legal documents such as the more familiar living will or other advance directives, which can be completed by those in good health, POLST is for when a serious diagnosis is known to the patient. It is more likely to be recognized, read and honored by emergency responders who show up for that potential emergency, such as a heart attack, when someone calls 911.

And, POLST advocates say, it’s not just about saying no to interventions such as cardiopulmonary resuscitation (CPR). Some POLST documents may detail that the person does not want to go back to the hospital or be put on a ventilator. Other orders might note a trial period to see whether aggressive treatments would be successful. But patients can express their treatment preferences, including for doctors to “do everything” medically feasible to keep them alive, if that is what they wish. Ideally, the POLST form signed by the doctor is copied to the patient’s electronic health record and given to close family members and the patient’s named surrogate decision maker for health care decisions.

Bright pink (or green) forms

Anderson’s doctor, Karl Steinberg, M.D., a geriatrician and hospice/palliative medicine physician in Oceanside, California, who makes home visits for Scripps Health, visited him at home to talk about POLST. “When he found out that I would not want to be resuscitated, Dr. Steinberg told me about the bright pink form I could fill out and put up on my wall where it could clearly be seen,” Anderson says. “I didn’t know there was such a form until Dr. Steinberg told me. It took some worry out of [the medical situation] for me.”

Anderson says he feels he is doing well, all things considered. “I know there’s no cure for any of my diagnoses.” Were he to die of a sudden heart attack, he says, he would want to be left in peace. “In fact, I’d call POLST the ‘rest in peace’ form.”

Steinberg told Anderson that discussing goals for medical care is a routine part of his visits with older patients. “I’m a big proponent of POLST in my practice,” he says. But patients shouldn’t be shy about bringing it up to their doctors or talking about it with their families. CPR is not what it looks like on TV, Steinberg adds. “Most people with serious illness don’t survive even the initial procedure, much less get back to a condition of full, active life.” One analysis of over 433,000 Medicare beneficiaries 65 or older who underwent CPR in U.S. hospitals found the chances of surviving and being discharged were about 18 percent.

Honoring patients’ preferences

Devised in Oregon in the early 1990s by medical ethicists and clinicians who had discovered that patients’ preferences for care at the end of life were not being consistently honored, the typically brightly colored, letter-sized POLST form has since spread to most states (and to locations in more than 20 countries) in a variety of versions and names and stages of development.

It has become mainstream, at least among health professionals. The original name, “physician orders for life-sustaining treatment,” is sometimes replaced by “portable medical orders” or simply “POLST.” The National POLST office, which is leading efforts to standardize its dissemination and promote recommended national language for the states to follow, calls POLST a process and a conversation as well as a form.

POLST has a specific place in medical planning, adds Judy Thomas, CEO of the Coalition for Compassionate Care of California (CCCC), the home for implementing POLST in California. In recent years CCCC has worked to standardize POLST statewide, she says. “We also got it established in statute, which has helped to make health care providers more comfortable with it, knowing they were complying with the law.”

CCCC has also developed training for health care providers on how to have conversations about POLST with consumers and taught hundreds of people to go out and train others. POLST is becoming better known, and more people have seen it used for a loved one, Thomas says. California’s 2021–2022 budget included funds to develop a statewide electronic registry of POLST forms.

In Oregon, with its three decades of experience with POLST, nearly half the people who die of natural causes have a POLST form in that state’s electronic registry, password-protected and accessible to EMS personnel and emergency care physicians, says Susan W. Tolle, M.D., a professor of medicine and director of the Center for Ethics at Oregon Health & Science University in Portland.

“If we could encourage people to take a deep breath and step forward and say, ‘I really want to talk about this,’ it could trigger conversations in their families. COVID is one more reason why we need to talk about it now,” she says.

“It is a true gift if you can engage in advance care planning, which would help your loved ones feel they know what you would want in a crisis and that they are doing what you would have wanted,” Tolle explains. “They won’t have to wake up at 2 a.m. and wonder if they did the right thing.”

Complete Article HERE!

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

When patients don’t want to be saved

— Navigating the right to die

By Jules Murtha

  • Patients have a right to shape their end-of-life care with advance directives and other palliative care options.
  • Clinicians can better serve patients of different faiths by approaching care with cultural competency.
  • When ethical dilemmas regarding palliative care arise, clinicians can return to the basic ethical principles: autonomy, beneficence, nonmaleficence, fidelity, and justice.

The relationship between morality and death is a historically significant one. Modern death in America often entails care provided by strangers in an institution flooded with machinery, far from the comfort of one’s family and home. Many physicians and scholars deem this a poor way to die.

Now, some patients nearing the end of their lives have an alternative to prolonged suffering in a hospital: Medical-assisted death. The moral logic supporting a patient’s right to terminate their life by means of lethal medication, either through self-ingestion or with a doctor’s help, is based on harm reduction. Legal, ethical, and professional controversies related to this practice are still surfacing.

The process of terminating care

Death is inevitable. The degree to which one suffers, however, can be modified by choosing appropriate end-of-life care. According to a 2021 article published by SAGE Open Medicine, mitigating suffering, optimizing quality of life, and providing comfort in death are the goals of palliative care.

What is an advance directive?

When a patient is no longer capable of communicating their desire to terminate treatments, advance directives are useful. An advance directive is a legal document specifying the kind of care a patient wants to receive, should they lose the ability to communicate due to a serious injury or neurodegenerative disease. Patients who complete them must be at least 18 years old.

Advance directives may include the following:

  • Living will: A legal document that describes medical or life-sustaining treatments patients may want if they become permanently unconscious or terminally ill. Writing a living will gives patients the power to make decisions for themselves when unforeseen circumstances arise.
  • Do not resuscitate order (DNR): The formal request that hospital staff do not perform CPR on an individual if their heart or breathing stops. DNRs do not have to be a part of a living will. They are accepted in all states.
  • Durable power of attorney for healthcare (DPA): Legal in most states, a DPA specifies whom is held responsible for a patient’s healthcare decisions if the patient is unable to make them on their own.
  • Physician orders for life-sustaining treatment (POLST): Designed for patients with serious illnesses, physicians complete POLSTs to ensure patients receive their desired care.

Advance directives may be especially helpful for patients who endure immense suffering. A patient with terminal cancer, for example, may document their request that hospital staff forgo  a respirator if they stop breathing. This gives the patient power over their own healthcare—which includes the right to die—and mitigates suffering by offering peace of mind.

Cultural competency and self-determination

Another factor for clinicians to consider when providing end-of-life care is each patient’s cultural and religious beliefs. When clinicians establish cultural competence—the ability to implement care with a patient’s cultural, religious, and social needs in mind—the quality of care improves.

The importance of cultural competence in healthcare extends to patients’ mental health and daily life. According to a 2021 article published by StatPearls, health-related anxiety diminishes in patients when they can turn to their faith.

Religion and spirituality inform some patients’ healthcare decisions regarding diet, medicine, modesty, and gender of their health providers. They can also inform practices surrounding death. For example, several religions strictly prohibit euthanasia, including Mormonism, Hinduism, Islam, Jehovah’s Witnesses, and others.

The influence of religion

On the other hand, physicians may legally refuse to provide certain types of standardized care that aren’t conducive to their own religious beliefs. This is often the case for Catholic doctors who refuse to perform abortions or sterilizations, as written in an article published by the American Medical Association Journal of Medical Ethics.

Doctors who choose not to provide emergency treatments based on conscience laws may be subject to tort liability, giving patients who are harmed by medical inaction the opportunity to sue for medical malpractice.

To avoid this situation altogether, physicians can abide by transparency requirements and protect patients from medical refusals by informing them about the practice. Patients may then seek appropriate care elsewhere, if possible.

Increased cultural competency and better palliative care options for patients of specific faiths is dependent on education. Patient care improves when physicians acquire cultural competence through proper training. Healthcare institutions fare better overall when their staff, including non-clinicians, are prepared to notify patients about medical refusals and a patient’s right to self-determination.

How medical ethics can aid physicians in palliative care

When doctors face ethical dilemmas regarding palliative care or a patient’s right to die, they can look to the universal ethical principles for guidance. According to SAGE Open Medicine, these principles include autonomy, beneficence, nonmaleficence, fidelity, and justice.

Medical ethics hinge on a healthcare professional’s ability to respect the autonomy of their patients. Autonomy, which is a patient’s right to self-determination, can be protected by advance directives before a patient loses the ability to create one. Patients have the right to terminate or refuse treatment altogether, which physicians should support out of respect for patients’ autonomy.

Reducing harm

When a patient no longer has the ability to create an advance directive, doctors must pursue treatment plans most beneficial to the patient. Physicians in this position can practice nonmaleficence by choosing care plans that cause the least possible amount of harm.

Justice and fidelity are served by doctors who are honest with their patients about prognoses and care options, including a patient’s right to terminate treatments. Truth-telling, as well as fair distribution and knowledge of health resources, is necessary in order to effectively respect patients’ self-determination.

While “dying badly” is still the norm in most of the US, there are 10 jurisdictions in which patients can pursue medical-assisted deaths. According to the Yale Journal of Biology and Medicine, Oregon, Montana, New Jersey, and Colorado are just a few.

What this means for you

Where legal, physicians can inform patients of their right to self-determination, granting them peace of mind and control in their final days. Regardless of your own spiritual or religious beliefs, acquiring cultural competence will improve the care physicians provide to patients. Finally, when end-of-life care presents physicians with ethical challenges, they can take a cue from the five ethical principles guiding healthcare professionals: autonomy, beneficence, nonmaleficence, fidelity, and justice.


  1. Akdeniz M, Yardımcı B, Kavukcu E. Ethical considerations at the end-of-life care. SAGE Open Medicine. 2021;9:205031212110009.
  2. Campbell CS. Mortal responsibilities: bioethics and medical-assisted dying. Yale J Biol Med. 2019;92(4):733-739.
  3. Familydoctor.org editorial. Advance Directives and Do Not Resuscitate Orders. Familydoctor.org. 2021.
  4. Kogan R, Kraschel KL, Haupt CE. Which legal approaches help limit harms to patients from clinicians’ conscience-based refusals? AMA Journal of Ethics. 2020;22(3):209-216.
  5. Swihart DL, Yarrarapu SNS, Martin RL. Cultural religious competence in clinical practice. In: StatPearls. StatPearls Publishing; 2022.

Complete Article HERE!

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.

The upper half of the California POLST.

By ,

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.
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.


  1. National POLST: History [Internet]. Washington DC: National POLST; c2017-2021. [cited 2021, Nov 3]. Available from: https://polst.org/history/
  2. 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.
  3. 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.
  4. Zive DM, Schmidt TA. Pathways to POLST registry development: Lessons learned. Portland, OR: Center for Ethics in Health Care Oregon Health & Science University. 2012.
  5. 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
  6. 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
  7. Physician Orders for Life Sustaining Treatment forms: registry, Cal. Assemb. B. 1234 (2021-2022)
  8. 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
  9. 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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