How to choose and prepare your DPOA, the person who may control the way you die

Man at the Helm, Portrait of Signac, 1892 by Theo van Rysselberghe

By Richard B. Stuart DSW, ABPP
Co-chair Ethics Committee, Swedish/Edmonds Hospital

Getting the end-of-life treatment you want requires cooperation by three people who care. It begins with you creating a living will that describes treatments you do and do not want. Remember that if you lose capacity to speak for yourself before you declare your preferences, you are at risk of undergoing the treatments that may better serve the interests of others than respect your interests. You also need a provider who understands what you want and who will translate your preferences into a Conditional Medical Order (CMO) or Medical Orders for End-of-Life Intervention (MOELI) that can be entered into your medical record to increase the likelihood that the treatment you undergo is the treatment you want to receive. To complete your team, you need a healthcare surrogate (also known as an advocate or proxy) who will request the service you want when you are incapacitated. Your surrogate is like the helmsman who has the vital job of steering the craft over troubled waters by carefully following instructions from the captain. Without a firm hand, the ship will be at the mercy of the sea: it might reach port, but could also crash on a rock. Without a strong surrogate, you could get the care you want, or much more or much less treatment than you desire.

Similar to other states, Washington provides the following guidelines for a Durable Power of Attorney (DPOA) (“durable” because it remains in force after you lose decision-making capacity):

If the decision that the patient would have made if competent cannot be determined, then the authorized person(s) must determine that the proposed health care is in the patient’s best interests. What choice would this particular individual make if he/she were competent?

Based on the patient’s preferences and eccentricities the decision may not be what most people would choose. (RCW 7.70.065(1)(c))

This statute also stipulates that when no DPOA has been authorized, the statutory hierarchy of possible decision makers includes, in order: court-appointed guardian, attorney in fact, spouse or domestic partner, adult children, parents, or adult siblings. The following may not be substitute decision-makers: any of the patient’s physicians or owners, administrators, or employees of treating facilities unless also a spouse, domestic partner, adult child, or sibling.

The attached Step 4 of 6 Steps Living Will ( provides a form for creating a DPOA that includes contact information for principal and backup surrogates. To avoid potential conflict during crises, you should have only one surrogate, with a designated second person who can step in if the first is indisposed. It also allows for designation of those people you do not want to allow to participate in critical care discussions despite their being legally authoried to do so. Notarization of the document is recommended, but verification by the signature of a witness who is not your doctor, an employee of the facility in which you receive care, or an heir can suffice. It is important to check the requirements in any state in which you expect your DPOA to be used.

Since your life is in your surrogate’s hands, it is essential to choose your advocate wisely. Many people unthinkingly pick a partner or other relative, but the person closest to you may not be the one who can do the best job for you. I have witnessed situations in which the wheels fall off the tracks when surrogates were too emotional to speak during critical discussions, clearly did not understand the issues, were unreachable, or were either so argumentative that they alienated providers or so acquiescent that they let providers do as they wish.

A good surrogate has at least the following 7 characteristics: (1) knows you well and understands your core values, (2) has sufficient health literacy to understand the meaning of treatment alternatives and their effects, (3) is willing to put time into learning the details about each option, (4) is reachable so you can communicate any changes in your plans and so your surrogate can be contacted to participate in critical care decision-making, (5) has enough emotional control in pressured situations to be able to think clearly and collaborate, (6) is willing to control personal bias and allow your values to guide decisions, and (7) meets the standard of mental capacity. In the state of Washington, surrogates cannot be your physician or employees of the facilities in which you receive care. Other states may have additional restrictions.

Before creating a DPO, it is important to raise the following questions with the person you would like to name as your surrogate to make sure your preferences will be presented effectively. (1) “What did you hear me request?” This question is important because people often hear what they want to hear rather than what the other person says. Inviting your surrogate to participate in discussions that create the orders is an excellent first step toward this understanding. Doing so also allows your surrogate to get answers to any questions that may augment understanding during decision-making crises. It also allows your provider and surrogate to meet, which can facilitate challenging discussions. It is also important to continue the discussion with your surrogate over time to offer a reminder of what you want and alert your surrogate to any changes. (2 and 3) “If you were in my condition, which treatment(s) would you choose for yourself?” And “How do the choices you would make for yourself differ from those I made?” These questions are essential as a way to differentiate your preferences from what your surrogate would choose so yours prevail. (4) “Did I direct you to limit choices strictly to terms in my CMO or MOELI or did I give you the authority to add your own perspective or that of others you may consult?” Since critical care options are rarely black or white and the trajectories toward death are variable, there is often room for discussion. Make clear whether you grant some latitude, and if you do, stress that the final decision must accord with your values. (5) “How would you respond if a provider or significant other urged you to override my choices?” You want to be sure that your surrogate will choose the course you want and will resist pressure to do otherwise. I have seen providers say things like, “when my mother was critically ill, this is what I decided….” Statements like this are coercive and totally inappropriate because they put surrogates on the spot, with the implication that doing anything else is uncaring. These “what…if” discussions can be great training.

End-of-life treatment decisions are emotional for all concerned, and passionate objections can be raised that threaten family ties. For example, one son might argue that “Dad is a fighter and wants everything possible done” while his brother believes that “Dad has put up a good fight and now wants to end his life with dignity before pain and incoherence destroy his identity”. In another family, while discussing their sibling’s critical care, one sister who considers pain “interesting and endurable” might want treatment prolonged while the other believes one should “meet death standing up” and be allowed to die without having become disoriented when immobilized and attached to multiple irritating tubes. It is important to accept the fact that everyone is entitled to an opinion. But when one insists that others must agree, families can irreparably fall apart due to the impact of intense battles that could have been avoided by the clearly written statement of the patient’s wishes. If possible, a high level of understanding and agreement can result from inviting all interested parties to join a meeting in which the patient and provider lay out the logic of the patient’s choice.

Living wills, CMOs, and MOELIs are wonderful documents. But they may not have any impact on the treatment you undergo if you did not choose a surrogate wisely and helped that person prepare to act in your interests when decisions must be made quickly during medical crises.

Additional resources

Standardizing Protection of Patients’ Rights From POLST to MOELI (Medical Orders for End-of-Life Intervention).
Stuart RB, Thielke S.J Am Med Dir Assoc. 2017 Sep 1;18(9):741-745. doi: 10.1016/j.jamda.2017.04.022. Epub 2017 Jun 13.PMID: 28623154

Use of conditional medical orders to minimize moral, ethical, and legal risk in critical care.
Stuart RB, Birchfield G, Little TE, Wetstone S, McDermott J.J Healthc Risk Manag. 2022 Jan;41(3):14-23. doi: 10.1002/jhrm.21487. Epub 2021 Nov 17.PMID: 34791745

Here is a sample:


Preparing your loved ones for when you are no longer there

It is essential to ensure that all your affairs are in order to avoid your family having to scurry around when you die.

By Tian Ebersohn

Since the outbreak of the Covid-19 pandemic, the virus has spread worldwide like wildfire, and millions of people have been affected by the unexpected death of a loved one. Nobody wants to think about death, but ask yourself this question right now – what if I were to die today? Would your loved ones be plunged into chaos and uncertainty and have to deal with this on top of the trauma of your passing?

In order to protect your loved ones from this harsh reality, you might want to apply the following practical guidelines while you’re still alive.

It is essential to ensure that all your affairs are in order, to avoid your spouse and family or your next of kin having to scurry around in the event of your death.

  • Put together a “life file” that contains all your important documents and information, along with a full list of, for example, your assets and liabilities, credit insurance, policies, usernames and passwords, as well as your executor and financial advisor’s contact details.
  • Ensure that you have a valid will in place.
  • Should you not wish to be kept alive artificially you might consider having a living will drawn up. A living will is an instruction to medical practitioners and your next of kin regarding your wishes if the difficult decision to turn off the machines that are keeping you alive must be taken. If you are a registered organ donor, you can also put this fact on record in your living will.
  • Your loved ones need to be aware of your wishes regarding cremation or burial, the details of any funeral cover you may have, and whom to contact when the inevitable happens.

The suggestions that follow might sound trivial, but make sure your spouse and family know how everything works in and around the house.

  • Be certain that your spouse has access to sufficient funds to cover all expenses for at least six to eight months. Most of us are aware of the challenges facing the Master’s offices nationwide, and estates are taking longer to be wound up.
  • Your spouse needs to start building up their own credit record in your lifetime to be able to qualify for services and utilities, a cell phone contract, a mortgage or a hire purchase agreement after your death, if not already.
  • Check that beneficiaries have been nominated for all your life policies, where necessary, and that nomination forms have been completed in respect of any annuities and group insurance you may have.
  • It is a good idea for your spouse to meet with your financial advisor and start building a relationship of trust between them so that the advisor can provide professional advice on your spouse’s future once you are longer there.
  • Have business continuity discussions with partners / next of kin to manage continuity and risks.
  • Ensure liquidity in the estate to pay administration costs, liabilities and taxes that will become due.

Using the above basic guidelines will have a positive effect and make the transition easier for all concerned.

Some guidelines for the surviving spouse to manage financial expectations:

  • Adequate funds are unlikely to be a major problem for your surviving spouse if you have managed your affairs well during your lifetime. This includes having made provision for life insurance so that there will be sufficient income to cover the expenses, as well as having set up a network of competent and reliable people to provide your spouse with professional advice.
  • If the surviving spouse is in the unfortunate position of having insufficient funds, careful planning must be done to provide for the basic expenses such as rent or a mortgage, as well as utility bills, food and insurance premiums.

It is important for your spouse to receive advice from a financial advisor – one with whom a good relationship has already been established – on investments, cash flow and how a basic budget (income and expenses) work. The financial advisor will assist here with a new plan to secure your spouse’s future.

  • Don’t be in a rush to make major financial decisions straight away. Something that sounds like a good idea right now will not necessarily seem so wise in six months or a year.
  • People are living longer and provisions must be made for the available funds to generate an adequate income. Ensure that the quantum of life insurance is determined in line with a properly prepared cash flow projection.
  • A surviving spouse should update their will in order to make provision for guardians, trusts and the like.

People often make poor financial decisions during the mourning process and therefore it is important to obtain reliable professional advice ahead of time in order to help you make well-informed choices, both for your benefit and for your family’s future.

Complete Article HERE!

Living-Will, Advanced Directives Can Be Saved in a New Video App

By: Kathleen Gaines

End-of-life decisions may be amongst the hardest decisions any family member might have to make for a hospitalized loved one. But with the proper advanced health care directives, it can make those decisions easier and less confusing. Unfortunately, most patients do not have advanced directives, especially those in the younger generations. The reality is that unless someone has a terminal illness or works in healthcare, they may not even know what an advanced directive is.

MIDEO Card is changing the conversation.

A revolutionary new app, MIDEO Card which stands for My Informed Decision on VidEO, is a video advance directive as well as a video medical order for life-sustaining treatment. The video is in the patient’s own words and has been formulated to translate all wishes into medical provider understanding.

What is an Advanced Directive?

Generally, advanced directives are done via a paper form that can be filled out in the hospital or online and printed. These forms discuss life-sustaining medical treatment and prolonging life.

According to the American Cancer Society, “life-sustaining medical treatment is any medical intervention, medication, or anything mechanical or artificial that sustains, restores that would prolong the dying process for a terminally ill patient.” These may include :

  • Breathing machines
  • CPR (cardiopulmonary resuscitation) including use of an AED (automated external defibrillator)
  • Medications such as antibiotics
  • Nutrition and hydration (food and liquids) given through feeding tubes or IVs

Once an advanced directive has been filled out it then needs to be given to your healthcare provider and placed into your health file. This can be problematic, especially in the case of an emergency. If an advanced directive is completed at home and never given to the primary healthcare team, it is possible that no one will know a patient’s true end-of-life wishes. Furthermore, if the patient is taken to a hospital out of state or not associated with their primary healthcare provider, then there will not be accessible to the advanced directive.

This is problematic.

MIDEO eliminates this by creating a digital footprint for the advanced directive and allows all providers access to it regardless of the healthcare system or state. It’s all done with a QR code and smart device.

According to a 2017 study, of 795,909 people in the 150 studies analyzed, 36.7 percent had completed an advance directive, including 29.3 percent with living wills. The proportions of terminal individuals to healthy individuals were similar. Based on this large study as well as others, it is evident that end-of-life discussions are essential to properly care for patients.

“Improving end-of-life care has been a national conversation for some time now, presumably because it will affect all of us at some point and is a very personal matter,” said senior study author Dr. Katherine Courtright of the Fostering Improvement in End-of-Life Decision Science Program at the University of Pennsylvania in Philadelphia.


MIDEO is designed to allow patients to directly speak their wishes with a representative and is stored on a digital identification card.

MIDEO takes the planning and consultation out of the hands of the hospital and hospital healthcare providers. MIDEO has a team of healthcare specialists that work with patients to find the options that are not only personalized but also the best for them and their loved ones.

As hospitals continue to feel the strain of the ongoing pandemic and nursing shortage, there are fewer and fewer resources dedicated to informing patients about advance directives and end-of-life decisions. MIDEO is helping to remove the strain.

Currently, there are three options available for MIDEO Card. Each provides a personalized virtual meeting with a specialist to discuss all aspects of advance directives and end-of-life wishes.

Essential Package (designed for healthy individuals):

  • Includes a standardized guided process with a Qualified Healthcare Professional to create your safety statement
  • 2 Copies of the Identification Cards.

Vital Package (designed for individuals with multiple medical problems or ages 60 & above):

  • Includes a guided process and detailed healthcare evaluation with a Board Certified Physician to create your safety statement
  • 2 Copies of the Identification Cards.

VIP Healthcare Concierge Advocate (designed for Individuals (e.g.: those with cancer) Who Require Navigation Through the Complex Medical System Who Have Specific Goals to Be Achieved): 

  • Includes the Vital Package, but also includes a designated Concierge Physician Advocate who will be available to assist and provide guidance 24 hours a day.

While there is a fee associated with the use of MIDEO Card, most major health insurance plans including Managed Medicare and Medicare with supplemental insurance plans have covered the cost of MIDEO in full or for a small co-pay.

As of January 1, 2016, Medicare-approved billing codes allow individuals to receive Advance Care Planning Education & Counseling. Commonly, this is considered the end of Life planning or counseling.

How It Works?

According to the website, the MIDEO video is accessed by any type of smart device including a smartphone and/or tablet. The camera feature scans the QR code technology on the MIDEO ID card of the patient. The video is then quickly retrieved within seconds in a safe and secure manner. 

MIDEO suggests informing all healthcare providers of the QR code and having it stored in your patient file so that it can be accessed immediately if needed. 

The video aspect is essential to the success of MIDEO and the future of advanced directives and end-of-life planning. Because many states allow individuals to complete advanced directives online without assistance, it is possible that individuals do not fully understand the choices presented to them or that they can make their own that are listed.

“As I like to say, the form is only as good as the conversation and the shared understanding that goes along with it,” said Dr. Rebecca Sudore of the University of California, San Francisco School of Medicine who wasn’t involved in the study.

“Some people do fill out these forms with families or lawyers, and then the forms sit in the dusty recesses of a back drawer and they are not available or shared with family and friends, especially before they are needed,” she told Reuters Health by email.

As Americans live longer, especially with chronic medical conditions, and healthcare continues to make advancements against the fight of once terminal diagnoses, it is essential that individuals make their end-of-life wishes known to not only their families but also to their healthcare providers. MIDEO Card takes away the guesswork. It leaves a lasting gift to families and loved ones having to make difficult decisions.

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:

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

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!

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 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!