Tag: Advance Directives

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Having Essential Conversations About Death

— If your wishes remain unspoken, you will leave your loved ones in a quagmire of confusion

“So many lives end not in a sudden moment, but in a gradual escalation of pain and suffering where the side effects of treatment do more damage to the quality of life than the disease itself.”

By Jill Smolowe

Since our first encounter on a cyber dating site in 2010, my husband and I have had a fluid conversation about death. That includes what we expect from the other should we find ourself hospitalized. Or facing a debilitating condition. Or trapped in a twilight between life and death. In other words, we discuss what we’re willing to endure. And what we are not.

Being able to share our thoughts openly — and discovering we were very much on the same page about quality of life over quantity of life — was a huge relief for both of us.

If that sounds odd or creepy, it may help to know that Bob and I met after each of us lost beloved spouses and longstanding marriages to cancer. From the get-go, caregiving, illness and death were front and center in our lives. Being able to share our thoughts openly — and discovering we were very much on the same page about quality of life over quantity of life — was a huge relief for both of us.

In 2023, our conversation intensified as we experienced two more losses. I appreciated that I could tell Bob that I was relieved that my older brother went quickly after a massive stroke last January that his doctors said would leave Alan’s physical and mental capacities severely impaired. I didn’t want to lose my brother. But even more, I didn’t want Alan to have to slog through years of a life that he would not have wanted.

Death and Illness Part of Our Lives

I knew this because Alan and I had discussed end-of-life wishes many times over the decades. He frequently quoted my parents, who liked to say, “Life is a day in the classroom.” Alan had lived, Alan had learned. After the stroke, I had no doubt that Alan wanted the bell to ring signaling class was over.

Far harder was the seven-month approach to death that my stepson endured before he closed his eyes for the last time in June. Just 41, Adam was determined to try anything and everything to overcome pancreatic cancer. It was upsetting to watch 150 pounds drop off his body because he couldn’t eat. It was horrifying to watch Adam become confined to bed because the cancer deprived him of the use of his legs. It was devastating to watch Adam shift from an autonomous adult to one fully dependent on others.

But all of that paled beside the physical pain Adam endured minute after minute, day after day, month after month. Neither opioids nor fentanyl could quiet his writhing agony. And there wasn’t a damn thing Bob or I could do to ease his pain.

But regardless of whether death is a portal to an afterlife or a final knell, we do share a belief that life is not worth living at any cost.

At night after Adam would go to bed, groaning up the stairs of our condo to lie awake moaning all night, Bob and I would say to each other, “I don’t know how he puts up with this.” We were clear that the literally gut-wrenching treatments were Adam’s choice, and a choice we would honor. We were clear that he was decades younger than either of us and had good reason to fight. But as we made clear to each other night after night, this was a choice neither Bob, at 74, nor I, at 68, would make.

After delving into the requirements surrounding the Medical Aid in Dying measure in our home state of New Jersey, Bob and I told each other that were we in Adam’s situation, we would want out. Where Adam refused to let the words “palliative care” and “hospice” into his hospital room until his very last days, we told each other that we regarded both as blessings, not curse words.

Bob and I do not share a belief about what comes next. But regardless of whether death is a portal to an afterlife or a final knell, we do share a belief that life is not worth living at any cost. So many lives end not in a sudden moment, but in a gradual escalation of pain and suffering where the side effects of treatment do more damage to the quality of life than the disease itself. Both us know that there are situations where we would regard death as the kinder option.

Because we have had front row seats to so much death and dying, we also know that people’s death wishes shift with circumstance. There can be little clarity if end-of-life wishes are shoved aside for a last-minute chat. Instead, we believe that death considerations need to be part of an ongoing discussion — one that needs to be shared not only between us, but with our children, as well.

Sometimes I forget that other people do not share our comfort level with such talk. A few weeks ago, Bob and I dined with a couple, good friends both, who between them have four parents in their nineties. After they laid out the difficult health issues and hard choices they were confronting, I asked if their parents wanted to continue living.

Talking About Death

Their expressions registered surprise at the question. Their answers conveyed more speculation than certainty. Neither seemed to know even if their parents feared or welcomed death at this advanced stage in their lives. Breezily (okay, too breezily), I shared some thoughts about dying, and then we parted.

Nine days later, I got a text from the wife, asking if she could stop by. Waving off my offer of coffee, she got right down to business. “You said some things the other night that scared me,” she said. “I’m worried about you.”

As she talked, it struck me that while she’d been brave enough to raise the sensitive subject of death with me, she didn’t feel she could do the same with her parents.

I blinked, trying to recall our dinner conversation. “Oh,” I said, “you mean the stuff about death?”

She nodded, her expression grim.

“I’m not suicidal, if that’s what you’re thinking,” I said.

Her expression relaxed a notch.

I reminded my friend that Bob and I had met because we’d each lost our spouses. I assured her that death was a natural part of our discussion. I reminded her that I’m a grief coach. That death comes up a lot in those conversations, too. Then, I apologized — sincerely — for having scared her. “You’re a good friend,” I said.

I felt deeply touched that my friend had cared enough to reach out to me. It’s not easy to open a conversation with someone you fear may be wrestling with mental health issues. To broach the subject had been not only caring, but brave.

After I laid her concerns to rest, our conversation segued into my friend’s feelings of helplessness and confusion about her parents’ care. As she talked, it struck me that while she’d been brave enough to raise the sensitive subject of death with me, she didn’t feel she could do the same with her parents. As a result, she was struggling to figure out what she thought was best for her parents— while not knowing what they thought was best for themselves.

“Have you considered looking into palliative care?” I asked.

“What’s that?” she replied.

Stunned by her response, my feeling of contrition evaporated in a gust of gratitude. Gratitude that Bob and I are able to discuss these difficult issues, not only between ourselves, but with our children. Gratitude that we know and understand each other’s wishes. Gratitude that we will not leave our children to have to make difficult choices we were unable or unwilling to make for ourselves.

Complete Article ↪HERE↩!

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6 Uncomfortable But Necessary Questions To Ask Your Older Parents

— It may never feel like the “right” time to have these conversations, but experts say you shouldn’t hold off.

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Talking to your parents about their end-of-life wishes may feel like an uncomfortable or morbid topic to bring up, and one that’s tempting to avoid altogether. But you don’t want to wait until your parents are in the midst of a health crisis to have these discussions when stress levels are high and they may have trouble communicating their wishes.

According to The National Hospice Foundation, talking about end-of-life wishes preemptively “greatly reduces the stress of making decisions about end-of-life care under duress. By preparing in advance, you can avoid some of the uncertainty and anxiety associated with not knowing what your loved ones want. Instead, you can make an educated decision that includes the advice and input of loved ones.”

We asked end-of-life experts to share some of the uncomfortable but important questions to ask your parents. Below, they also offer advice on how to approach these daunting conversations.

1. Do you have an up-to-date advance care directive?

Advanced directives include legal documents such as a living will and medical power of attorney. A living will explains what health care treatment a person would — and would not — like to receive near the end of life, or if they are otherwise unable to speak for themselves. A medical power of attorney — sometimes referred to as a durable power of attorney for health care — is a document naming the person who will be responsible for making medical decisions if the patient cannot. It’s important that your parents not only put these preferences in writing, but also talk through them with you so you can properly honor their wishes.

Only one-third of Americans have advanced care directives in place, “leaving family members often struggling to determine what their parent’s wishes are or making choices that they may not have made for themselves,” Loren Talbot, director of communications for the International End-Of-Life Doula Association (INELDA), told HuffPost. “There are resources that are culturally competent and multi-language guides to help walk your folks through the process. Make sure you review by the state you live in.”

To get started, Talbot recommended resources such as The Conversation Project, Five Wishes and My Directives.

Dr. VJ Periyakoil is a palliative care doctor, as well as the founder and director of the Stanford Letter Project, a tool that helps people plan for their future including end-of-life medical care, using different letter templates.

For example, their “What Matters Most” template “helps a person write a letter to their doctor and health care team about their goals of care and their values,” Periyakoil told HuffPost. “Family members can use our letter template to have a gentle conversation with their parents and help them complete their letter advance directive to their doctor.”

It includes prompts about how medical decisions are made in the family, how bad news is handled, whether they’d want to be put on a ventilator (breathing machine) or sedated if they were in extreme pain.

“The goal of this conversation is to ensure that our parents have a voice in their care and give them ample opportunity to provide us with anticipatory guidance,” Periyakoil told HuffPost.

2. Have you thought about what you want the end of your life to look like? If so, can you share what you’re envisioning?

Some folks have a clear picture of what they want theirs to look like; others may avoid such thoughts, Talbot said. This question will help you understand their desires so you know how to best support them when this time comes.

“Just let them talk at that moment and listen. Some possible follow-up could be: Do you know where you want to be — home or care facility? What would the room look like? Does it have pictures of their loved ones pinned up or specific music playing as they are actively dying?” she said.

“Some of the same choices we make during life, we can plan for at death. Do you want to have any rituals or customs take place prior to death? There are so many questions that can be shared to help people really define their needs. End-of-life doulas are trained in asking these questions, and can support individuals and their families to create a plan.”

“The time to broach the conversation is now. It doesn’t serve you or your loved one if you continue to avoid it or ignore the reality of death.”
– Aditi Sethi, hospice physician and end-of-life doula

To help guide these conversations, Talbot recommended resources such as The Death Deck, Death Over Dinner, GoWish Cards, or connecting with an end-of-life doula via the INELDA Directory.

You might also ask about how flexible your parent is about potential living arrangements in the event that their caregiving needs increase, said hospice physician and end-of-life doula Aditi Sethi.

For example: “Would you move into our home with our three kids so we could take care of you? Or could we move in with you?” Sethi, who is also the executive director of Center for Conscious Living and Dying, told HuffPost.

“There is fear amongst some parents that their children are too busy to care for them or incapable for various reasons. With our caregiver crisis, aging population, undesirable options for care — few people want to go to nursing homes and few can afford 24/7 care in the home — it is imperative that we all get creative and let go of being rigid to how it ought to be.”

3. What do you expect of me and your other kids as you approach your dying season?

This conversation might include asking your parents about how involved they’d like you to be with things like personal care — bathing them or repositioning them in bed, for example.

“Being clear with your loved ones about their wishes for their care, assumptions and expectations of your involvement, can alleviate the stress of having to decide at the last minute or do something that will cause more agitation, resentment and hard feelings,” Sethi said.

“This is especially true for cultural norms and expectations in a modern world where children are not always local and there may be some unspoken assumptions and expectations of them that may not be met due to obligations, commitments,” she added.

4. What do you want us to do with your belongings after you’re gone?

Dealing with a deceased loved one’s possessions “can be a daunting task if not addressed or discussed prior to a death” — and one that can stir up a lot of conflict among living family members, said Sethi. So it’s best to talk this through with your parents ahead of time.

“There is much involved in distributing, selling, discarding or dispersing of belongings, cherished objects, furniture, cars, house, etc.,” she said. “It’s helpful for your loved ones still alive if you organize paperwork, designate your wishes for where personal objects are going — this avoids disagreements, drama and ambiguity — and get your affairs in order as much as possible before you go.”

5. What would you like to happen to your body after you die?

While it’s important to talk about their preferences for how their belongings are handled, it’s also important to discuss what will happen to their physical body.

“Do they know what their options are after they die? Have they considered a brain donation, what type of service they want, a home funeral, a green burial, a traditional funeral or cremation?” Talbot said. “There are so many more options today then they may even know. Knowing and asking what they may want after death is honoring their autonomy during their life.”

6. If you die before your spouse, what resources are available to help mom/dad as they age?

These resources might include long-term care insurance or money set aside for the care of an aging parent, Sethi said.

“Some parents have already bought into a retirement community. It’s important to know these things to best care for your living parent,” she said.

Advice On How To Broach These Conversations

End-of-life professionals share guidance on how to approach these difficult conversations with your parents.

First, know that it may never feel like the “right” time to talk about your parents’ end-of-life wishes. Don’t put off these conversations or wait for the perfect moment to strike because then they may never happen.

“The time to broach the conversation is now,” Sethi said. “It doesn’t serve you or your loved one if you continue to avoid it or ignore the reality of death.”

If you try to talk about end-of-life wishes when your parents are healthy, it’s possible they’ll think it’s “too premature,” she said.

“If you do it over the holiday dinner table when all the family is together, it’s ‘too serious,’ ‘too morbid’ or ‘not the proper time,’” Sethi said.

But if you hold off on talking about this until they’re diagnosed with a terminal illness, your family may still want to avoid having these discussions because it seems pessimistic, and they’d rather stay hopeful that things will turn around.

“And then, as someone is clearly dying, family may not want to broach the conversation for fear it may cause anxiety or depression — and oftentimes family and friends don’t now how to broach this conversation,” Sethi said.

She suggests revisiting end-of-life discussions roughly every three to five years or when there’s a major life event such as a divorce, serious diagnosis or decline in their health.

To open up the discussion, Periyakoil said you can try this pitch, which she has tested and said “works really well.”

“I am getting old, and you both are getting older. This is a wonderful thing for our family, and I hope we have many wonderful years together. As we prepare for the future, I would like us to think about completing some simple forms that will help our doctors and our family best support us,” she told HuffPost.

“If you get push back like, ‘Not now!’ or ‘It’s too early,’ you should gently respond, ‘It is always too early until it is too late.’”

No adult is ever too young or too old to start discussing these decisions, Periyakoil said. In fact, when you’re having these conversations with your parents, you can also start to contemplate your own preferences if you haven’t already.

Another way into the conversation is by leaning into what your family is interested in, Talbot said.

“If they love movies, there are so many great end-of-life films out there. If they or you love hosting dinner parties, consider a ‘Death Over Dinner’ night. Having conversations about planning for end-of-life and death can be healing and help to alleviate family conflict and unrecognized wishes.”

Complete Article ↪HERE↩!

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It’s Never Too Soon to Start End-of-Life Conversations

— Patients can make their preferences known away from the pressures of acute illness

By Fred Pelzman, MD

There are the things that matter, and then there are the things that really matter.

As I’ve often written, through the course of a primary care office visit, and over the course of a long-term relationship between a patient and their primary care doctor, there are so many things we need to attend to.

So many acute issues, so many chronic medical problems, so many unmet health needs, so many social determinants of health that our patients struggle with, the massive issues of mental health, and the healthcare inequities and disparities that exist across the spectrum of our society.

I’ve written before about how much time it would take to take care of everything — to go through all the patient’s issues, all the vaccines and other healthcare maintenance items, all the screenings mandated by insurance companies, and all the questionnaires that bombard our patients (and us) from before their visit even starts through the time they leave the practice.

But of course, there are often things that get left unsaid, unattended to, or put off for another day.

Apart from the moment a decision is finally required, we oftentimes put off end-of-life discussions and other issues surrounding these complicated topics.

Things like signing a healthcare proxyopens in a new tab or window, having a discussion with their family about what they would want done at their end-of-lifeopens in a new tab or window, whether they want to donateopens in a new tab or window their organs, whether they want an autopsy when they pass.

Each of these topics could take a day, a week, a month, a year, a lifetime.

Patients’ ideas about each of these things change over time, change with their circumstances, change in the moment.

What we think we want when we’re young and healthy and seemingly immortal sometimes changes in the heat of a critical moment, a catastrophic illness, a tipping point, a time to decide.

How many times have each of us had a patient who got to this point and both doctors and the patient’s family wished we’d had more time to talk to them to understand what their loved one really wanted.

As part of my initial visit with patients, I tell them I’m there to be an advocate for their health, to help them navigate through our incredibly challenging healthcare system, and to try and be there for them as much as I can.

Our practice used to hand out paper copies of the New York State healthcare proxy and living wills forms.

But somewhere along the line — perhaps due to the cost of printing all those paper forms — the hospital decided we wouldn’t be doing that anymore.

Now when I meet a new patient, I send them a link to those forms in the electronic after-visit summary once we’ve wrapped up for the day, and they can print them out at home. I am hopeful the forms will help them make these decisions in a calm manner, away from the pressures of an acute illness, talking it all over with those that matter most in their lives.

Whenever time allows, I tell my patients — from the youngest to the oldest, the incredibly healthy to the terribly sick — that I have these conversations with everybody, that everyone should make their family and other loved ones know what they would want done in these difficult situations.

I know there is a lot of debate about how much this can change, how the decision to do nothing and pass peacefully can be interrupted by a critical illness when maybe, just maybe, if we only do just a little more, just a few more days, then things might turn around.

But for all of us this is a good place to start: to find out what a patient’s wishes are, to help make things easier for them, for the team of healthcare providers taking care of them, and for everyone who’s close to them who will ultimately be so deeply affected by what happens next.

Perhaps someday we’ll be a mature enough society where, instead of having to convince someone to be an organ donor, the default would be to donate any of our viable organs for the benefit of others (like it is for much of the rest of the world).

Perhaps someday we can use the idea of an autopsy to help advance medical knowledge, to help understand the process of living and dying, to help the next person in line who might benefit from what we learn.

And maybe even someday the issues of a dignified death, of maximizing the use of hospice and palliative care, of helping our loved ones get the peace they desire, will no longer raise such societal ire and create so much resistance.

I know this is a lot, I know that each of these topics comes with an enormous amount of charged societal and emotional baggage, and there are strong opinions on all sides.

For now, I’ll keep telling my patients to think about it, to think about how they’d feel, how they want their family to feel, how much better it will be if everyone is on the same page.

Far too often we’ve seen families torn apart by these decisions during the last days of a patient’s life. And none of us want to see that happen.

Complete Article ↪HERE↩!

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Do end-of-life conversations make you nervous?

by Chris Brinneman, MSW, LCSW

If your family is like mine, you enjoy coming together to talk about living your best lives, planning vacations and making sure you are incorporating the activities and people you love into your calendar. But my family, perhaps unlike your family, also appreciates opportunities to discuss plans and preferences pertaining to potential health issues and scenarios, what we want our final days to look like, death and dying. We recognize that particularly given my profession, this might make us the exception to the norm. But it doesn’t have to be.

If you’ve seen the new Barbie movie, you can appreciate that I often feel like most people are the supporting characters in that film–dancing and having a great time–and I’m the one asking, “Do you guys ever think about dying?” It can certainly cause the record to scratch and the music to stop.

I’m incredibly grateful for my family’s willingness to engage in crucial conversations. After years serving and observing as a hospice and palliative care social worker, I boldly support not waiting until it’s too late to start talking about advance care planning (ACP) and end-of-life planning. I recommend inviting the people who matter most to us to have these discussions so that we know how to advocate for them in the event of a medical crisis and they know how to do so for us. Is it as light and lovely as vacation planning? Probably not. But it is one of the greatest gifts we can give to the people we care about.

Making ACP approachable

We live in a society where people predominantly avoid the subjects of aging and death. This can make it very challenging to broach the subject of end-of-life preferences. But I tell people to start by simply opening the door, metaphorically and physically, and inviting people in to chat. This could be on your own or with the help of an ACP advocate. The important thing is just to start, because these conversations evolve over time and are best when revisited as circumstances and expectations change.

My mom used to tease, with some underpinnings of truth, that her end-of-life plan was for us to “put her on an iceberg with a polar bear.” She grew up in a home where talking about death and dying was not the norm, as their faith did not accept the reality of death. As she got older, and three of her five adult children worked in healthcare, Mom became more willing to engage in ACP discussions sans the polar bear. A big motivator for this shift was that we, as a family, began to normalize talking about sickness, dying and death. We invited her to have conversations, and over time, she was able to clearly identify the person she wanted to make healthcare decisions for her if she could not make her own and state what her treatment preferences were for future care.

Setting the stage and starting the dialogue

You, too, should begin the conversation about advance care planning with your family and friends. If that makes you anxious or triggers you to feel overwhelmed, I want to offer some suggestions for broaching the subject from a different place.

Here are some ways you can start a crucial conversation in a format that feels good for you and your family:

  • Tee up the discussion in a neutral way. You don’t have to say, “Let’s have a difficult conversation and talk about your death.” These discussions should never be framed in a negative way. Rather, try beginning a dialogue with loved ones from the truth that completing ACP early allows you (and them) to think about and reflect on what is important when health changes, even though that may be years away.
  • Set the stage or take advantage of the situation. There are times when talking about death and dying fits seamlessly into a conversation or event. For example, if you learn of a sudden medical crisis with an acquaintance or friend, use the news to spark a discussion about what you would want in a similar situation. Similarly, there are settings and scenarios that support this type of intimate conversation. When walking and talking with a loved one, for instance, you can use the dedicated private time together to communicate about your wishes.
  • Dose these conversations out over time. You don’t have to tackle the entirety of your end-of-life wishes in one sitting or conversation. Talk a bit. If you start to feel overwhelmed or like you’ve made progress, leave it. Talk again when you’re ready.  
  • Emphasize key messages. ACP is good for all adults, regardless of age or health. We have a say in our care. Treatments only work if they work for us, each individually. We can change our minds. But it’s always imperative that you make the things that are most important to you known, so that the people who will be making decisions for you can be your voice. 
  • Lighten the emotional weight of the subject matter. If you struggle with the topic of end-of-life, as many do, there are games available to help guide the dialogue with a brighter approach. The Death Deck, Hello and Morbid Curiosity are great options. There are websites that offer resources like The Conversation Project Starter Kit.

I’ll leave you with this. Last year, I dropped my car off at the dealership to have some work done. The driver of the shuttle who took me to work asked what I did for a living, and I explained my work in advance care planning. By the time we concluded our short commute together, he had my card, and I had his promise that he would speak with his wife and call to schedule an appointment. He did. And you can, too.

Invite the people you love to have the dialogue–as many times as it takes. Be open to the gifts and relief these conversations can bring. Use the resources you need to ease any apprehension. And appreciate the opportunity to make your wishes known, because, unlike in Barbie’s world, we all think about death. We just need to normalize talking about it.

Complete Article ↪HERE↩!

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How Advance Care Planning Neglects Black Americans

— Researchers are rethinking living wills and other ACP documents to ensure seriously ill patients get the care they want.

By Carina Storrs

When Kevin E. Taylor became a pastor 22 years ago, he never expected how often he’d have to help families make gut-wrenching decisions for a loved one who was very ill or about to die. The families in his predominantly Black church in New Jersey often didn’t have any written instructions, or conversations to recall, to help them know if their relative wanted — or didn’t want — certain types of medical treatment.

So Taylor started encouraging church members to ask their elders questions, such as if they would want to be kept on life support if they became sick and were unable to make decisions for themselves.

“Each time you have the conversation, you destigmatize it,” said Taylor, now the senior pastor at Unity Fellowship Church NewArk, a Christian church with about 120 regular members.

Taylor is part of an initiative led by Compassion & Choices, a nonprofit advocacy group that attempts to encourage more Black Americans to consider and document their medical wishes for the end of their lives.

End-of-life planning — also known as advance care planning, or ACP — usually requires a person to fill out legal documents that indicate the care they would want if they became unable to speak for themselves because of injury or illness. There are options to specify whether they would want life-sustaining care, even if it were unlikely to cure or improve their condition, or comfort care to manage pain, even if it hastened death. Medical groups have widely endorsed ACP, and public awareness campaigns have promoted the practice.

Yet research has found that many Americans — particularly Black Americans — have not bought into the promise of ACP. Advocates say such plans are especially important for Black Americans, who are more likely to experience racial discrimination and lower quality care throughout the health care system. Advance care planning, they say, could help patients understand their options and document their wishes, as well as reduce anxiety for family members.

However, the practice has also come under scrutiny in recent years as studies reveal that it might not actually help patients get the kind of care that they want at the end of life. It’s unclear whether those results are due to a failure of ACP itself, or due to research methods: Comparing the care that individuals said they want in the future with the care they actually received while dying is exceedingly difficult. And many studies that show the shortcomings of ACP look at predominantly White patients.

Still, researchers maintain that encouraging discussions about end-of-life care is important, while also acknowledging that ACP either needs improvement or an overhaul. “We should be looking for, OK, what else can we do other than advance care planning?” said Karen Bullock, a professor of social work at Boston College, who researches decision making and acceptance around ACP in Black communities. “Or can we do something different with advance care planning?”

Advanced care planning was first proposed in the U.S. in 1967 when the now-defunct Euthanasia Society of America advocated for the idea of a living will — a document that would allow a person to indicate that they wouldn’t want to be kept alive artificially if there were no reasonable chance of recovery. By 1985, most states had adopted living will laws that established standardized documents for patients, as well as protections for physicians who complied with patients’ wishes.

Over the last four decades, ACP has expanded to include a range of legal documents, called advance directives, for detailing one’s wishes for end-of-life care. In addition to do-not-resuscitate, or DNR, orders, patients can list treatments they would want and under which scenarios, as well as appoint a surrogate to make health care decisions for them. Health care facilities that receive Medicare or Medicaid reimbursement are required to ask patients about advance directives and provide relevant information. And in most states, doctors can record a patient’s end-of-life wishes in a form called a physician order for life-sustaining treatment. These documents require that patients talk with their physician about their wishes, which are then added to the patient chart, unlike advance directives, which usually consist of the patient filling out forms themselves without discussing them directly with their doctor.

Many people simply aren’t aware of ACP, or don’t fully understand it. And for Black individuals, that knowledge may be especially hard to come by.

But as far as who makes those plans, studies have shown a racial disparity: In a 2016 study of more than 2,000 adults, all of whom were over the age of 50, 44 percent of White participants had completed an advance directive compared with 24 percent of Black participants. Meanwhile, a 2021 analysis of nearly 10,000 older adults from a national survey on aging found that Black Americans were 57 percent less likely than White Americans to have a health care surrogate.

Many people simply aren’t aware of ACP, or don’t fully understand it. And for Black individuals, that knowledge may be especially hard to come by: Several studies have found that clinicians tend to avoid discussions with Black and other non-White patients about the care they want at the end of life because they feel uncomfortable broaching these conversations or unsure whether patients want to have them.

Other research has found Black Americans may be more hesitant to fill out documents because of a mistrust of the health care system — rooted in a long history of racist treatment. “It’s a direct, in my opinion, outcome from segregated health care systems,” said Bullock. “When we forced integration, integration didn’t mean equitable care.”

Religion can also be a major barrier to ACP. A large proportion of Black Americans are religious, and some say they are hesitant to engage in ACP because of the belief that God, rather than clinicians, will decide their fate. That’s one reason why programs like Compassion and Choices have looked to churches to make ACP more accessible. Numerous studies support the effectiveness of sharing health messages in church — from smoking cessation to heart health. “Black people tend to trust their faith leaders, and so if the church is saying this is a good thing to do, then we will be willing to try it,” Bullock said.

But in 2021, an article by palliative care doctors laid bare the growing evidence that ACP may be failing to deliver on the promise to get patients the end-of-life care they want, also known as goal-concordant care. The paper summarized the findings of numerous studies investigating the effectiveness of the practice and concluded that “despite the intrinsic logic of ACP, the evidence suggests it does not have the desired effect.”

For example, while some studies identified benefits such as increasing the likelihood of a patient dying in the place they desired and avoiding unwanted resuscitation, many found the opposite. One study found that seriously ill patients who prioritized comfort care in their advance directives spent just as many days in the hospital as patients who prioritized life-extending experiences. The authors of the 2021 summary paper suggested several reasons that goal-concordant care might not occur: Patients may request treatments that are not available, clinicians may not have access to the documentation, surrogates may override patients’ requests.

A pair of older studies suggested these issues might be especially pronounced for Black patients. They found that Black patients with cancer who had signed DNR orders were more likely to be resuscitated, for example. These studies have been held up as evidence that Black Americans receive less goal-concordant care. But Holly Prigerson, a researcher at Cornell University who oversaw the studies, noted that they investigated the care of Black participants who were resuscitated against their wishes, and in those cases, clinicians did not have access to their records.

In fact, one issue facing research on advance care planning is the fact that so many studies have focused on White patients, giving little insight into whether ACP helps Black patients. For example, in two recent studies on the subject, more than 90 percent of patients were White.

“It’s a direct, in my opinion, outcome from segregated health care systems,” said Bullock. “When we forced integration, integration didn’t mean equitable care.”

Many experts, including Prigerson, agree that it’s important to devise new approaches to assess goal-concordant care, which generally relies on what patients indicated in advance directives or what they told family members months or years before dying. But patients change their minds, and relatives may not understand or accept those wishes.

“It’s a very problematic thing to assess,” said Prigerson. “It’s not impossible, but there are so many issues with it.”

As for whether ACP can manage to improve end-of-life care specifically in areas where Black patients receive worse care — such as inferior pain management — experts, such as Bullock, note that studies have not really explored that question. But addressing other racial disparities is likely more critical than expanding ACP, including correcting physicians’ false beliefs about Black patients being less sensitive to pain, improving how physicians communicate with Black patients, and strengthening social supports for patients who want to enroll in hospice.

ACP “may be part of the solution, but it is not going to be sufficient,” said Robert M. Arnold, a University of Pittsburgh professor on palliative care and medical ethics, and one of the authors of the 2021 article that questioned the benefits of ACP.

Many of the shortcomings of ACP — from the low engagement rate to the unclear benefits — have prompted researchers and clinicians to think about how to overhaul the practice.

Efforts to make the practice more accessible have spanned creating easy-to-read versions, absent any legalese, and short, simple videos. A 2023 study found that one program that incorporated these elements, called PREPARE For Your Care, helped both White and Black adults with chronic medical conditions get goal-concordant care. The study stood out because it asked patients who were still able to communicate if they were getting the medical care they wanted in-the-moment, rather than waiting until after they died to evaluate goal-concordant care.

“That to me is incredibly important,” said Rebecca Sudore, a geriatrician and researcher at the University of California, San Francisco, who was the senior author of the study and helped develop PREPARE For Your Care. Sudore and her colleagues have proposed “real-time assessment from patients and their caregivers” to more accurately measure goal-concordant care .

“Sometimes it’s awkward,” Taylor said. “But it’s now awkward and informed.”

In the last few years, clinicians have become more aware that ACP should involve ongoing conversations and shared decision making between patients, clinicians, and surrogates, rather than just legal documents, said Ramona Rhodes, a geriatrician affiliated with the University of Arkansas for Medical Sciences.

Rhodes and her colleagues are leading a study to address whether certain types of ACP can promote engagement and improve care for Black patients. A group of older patients — half are Black and half are White — with serious illnesses at clinics across the South are receiving materials either for Respecting Choices, an ACP guide that focuses on conversations with patients and families, or Five Wishes, a short patient questionnaire and the most widely used advance directive in the U.S. The team hypothesizes that Respecting Choices will lead to greater participation among Black patients — and possibly more goal-concordant care, if it prepares patients and families to talk with clinicians about their wishes, Rhodes said.

When Taylor talks with church members about planning for end-of-life care, he said they often see the importance of it for the first time. And it usually convinces them to take action. “Sometimes it’s awkward,” he said. “But it’s now awkward and informed.”

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How to Make a Caregiving Plan

— So It’s Ready When You Need It

Talking about aging and illness can be difficult, but experts have tips for getting started.

By Lynya Floyd

Iris Waichler sat at the kitchen table with her husband, Steven, and seven friends. They were gathered to discuss their single, childless friend Paul Mungrides. But this wasn’t a lighthearted chat about finding the 56-year-old a date. They were there to talk about his end-of-life wishes.

A few weeks earlier, Mr. Mungrides was diagnosed with an aggressive form of brain cancer that carries a 12- to 15-month life expectancy with treatment. He shared the news with Mr. Waichler, one of his best friends, who organized the rest of the group. They were the only people Mr. Mungrides could rely on for palliative care; his sole sibling lived out of state.

“We had plenty of time early on to talk about what he wanted, what his insurance covered, his finances,” Mrs. Waichler, a 68-year-old medical social worker based in Chicago, said.

Together, they devised a plan: One friend, a doctor, found Mr. Mungrides an oncologist. Mr. Waichler and another friend visited at night, watching Chicago Bulls games and helping Mr. Mungrides bathe. Mrs. Waichler did laundry, arranged meals and coordinated hospice care until Mr. Mungrides passed away in March 2012.

“We took care of him for almost a year,” she said. “We even arranged the memorial celebration.”

If this scenario sounds exceptional — like an ideal end-of-life story — that’s because it is. There are around 53 million unpaid caregivers in the United States, and their experiences don’t typically start with a detailed plan and a committed team. A partner is rushed to the hospital, or a spontaneous visit to a parent’s house reveals a bare fridge and stacks of unopened mail. Seemingly overnight, caregivers can find themselves alone and overwhelmed, careening toward burnout and exhaustion.

Creating a plan, even like the one Mr. Mungrides’s friends developed, won’t protect against every potential curveball. But carving out time before illness strikes to discuss wishes, assess resources, organize medical documents and, ultimately, outline responsibilities can make a fraught process a little less harrowing.

What to include in a caregiving plan

A comprehensive plan should list daily needs and designate a person to handle them once you or a loved one falls ill. It can be incredibly detailed, stipulating who will do grocery shopping or household chores, who will ensure medications are taken and prescriptions are refilled, and who will provide live-in care if necessary.

If you’re short on time, Aaron Blight, the author of “When Caregiving Calls: Guidance as You Care for a Parent, Spouse or Aging Relative,” recommended focusing on five questions: What care is required? When is it needed? Where will it be received? Who will provide the support? How will you pay for it?

There are also legal decisions to make, said C. Grace Whiting, the executive director of the National Academy of Elder Law Attorneys. The legal titles and document names can vary, she said, but you should choose someone, like a health care proxy, to make medical decisions in the event you’re unable, as well as give someone power of attorney, so they can act on your behalf in financial, legal and other matters.

You should also write out an advanced directive, a legal document that provides, among other things, clear guidance about the level of care you want in a medical emergency if you can’t speak for yourself. And you should consider drafting a last will and testament that outlines how you want to allocate money, assets, intellectual property and other belongings.

If you are transitioning into a caregiver role, a legal care contract that describes the caregiver’s responsibilities and any compensation is also worth considering, Ms. Whiting said. “A lot of people just leave $300 a month on the kitchen table for the family member helping them,” she explained. “These contracts not only help avoid family disputes about where the money went, but also help you bypass tax implications down the road.”

Settling legal matters as early as possible will only make the caregiving experience easier down the line, and everyone can rest assured that those affairs will be taken care of. When Andy Jurinko’s pancreatic cancer progressed in the winter of 2011, his wife, Pat Moore, called a lawyer to finalize paperwork.

“It is the worst thing in the world to be laying in your bed, dying, and having a lawyer ask you questions about who should get what,” Ms. Moore, 69, a sweater designer from New York City, said. “If you wait until the last minute, you’re in such a bad place.”

Several caregivers we spoke to cited another person’s crisis as a catalyst for caregiving discussions. “After 9/11, my parents did most of the work themselves: meeting with lawyers and having a binder made up of all the documents we’d need,” Kitty Eisele, the host and creator of “Twenty-Four Seven: A Podcast About Caregiving,” said. “They came to us and said: ‘Here’s the paperwork, here’s the lawyer’s contact info. If something awful happens, you know what to do.’”

But for those who may be reluctant to have those conversations, there are other ways to begin talking about caregiving with loved ones:

1. Start with goals instead of problems.

It’s tempting to problem-solve when you’re concerned, but Liz O’Donnell, the founder of Working Daughter, a community for women balancing elder care with their careers, warned against that approach. Instead, she said, ask open-ended questions that give loved ones agency and allow them explore possibilities.

“It’s not, ‘You know you can’t live in this house anymore’ or ‘It’s not safe for you to drive anymore,’ but ‘What’s important to you as you look at the next phase of life?’” she said.

Claudia Fine, a licensed social worker and chief professional officer at eFamilyCare, suggested explaining that caregiving is somewhat inevitable — most people will eventually need it — while keeping a positive tone. “You can say: ‘At some point, before we have a crisis, I’d love to know what your thoughts are for if something were to happen; that way I can support you in this,’” she said.

2. Remember that you’re on the same team.

Conversations about caregiving can become contentious, but “the preferences, likes and dislikes of the person receiving care should be at the forefront,” said María P. Aranda, a professor of social work and the executive director for the Edward R. Roybal Institute on Aging at the University of Southern California. “It’s a shortsighted approach to not engage that person in their own care trajectory.”

You can also decide together who else might be able to help. “There’s an assumption that there will only be one caregiver present during the entire journey,” said Dr. Aranda, who suggested an approach that involves multiple supporters who can change over time.

3. Expect several conversations.

“It’s like asking for a raise,” Ms. O’Donnell said. “You don’t get it as soon as you walk into your boss’s door. It’s a negotiation.”

You might get shut down the first time you bring up the topic. “To you, this is just a conversation about practicality, safety and support,” Ms. O’Donnell said. “To them, it’s about loss, lack of independence and more change in a time when they’re already experiencing a lot of change. There can be a lot of fear around this.”

It’s also possible that your best-laid plans will need tweaking over time. Caregiving is dynamic, and what seemed like a perfect solution might prove ineffective later.

4. Lean on templates and icebreakers.

If you’re struggling to find the right approach, there are many resources available. A public health initiative called The Conversation Project, for example, provides free guides and scripts for starting conversations as well as communicating wishes for end-of-life care. There’s even a card game called Hello! that aims to ease participants into discussing their feelings about living and dying.

Managing care and expectations

Even if you create a plan, caregiving may still come with obstacles. “Sometimes there’s no rainbow at the end of the tunnel,” Dr. Aranda said.

After realizing that her parents would eventually need more support, Dr. Aranda and her sister had a conversation with them about hiring a home health aide. “They looked at us very perplexed and I thought, ‘This is not going well,’” she said. “The idea of having hired help coming into the home was foreign to them.”

Dr. Aranda and her sister ended up taking on more responsibility and increasing the hours they spent with their parents. But honoring someone else’s wishes for their care doesn’t mean you have to set aside your own needs. Experts recommended prioritizing self-care that goes beyond the occasional spa day and focuses, instead, on finding resources that yield financial, physical and emotional support.

“Many caregivers don’t know what services are available to them,” Dr. Aranda said. To explore your options, she recommended asking health care professionals, senior organizations and other caregivers how to get access to resources that could be helpful. “It’s amazing to see how families can learn from one another,” she said.

Revisiting your medical or employee benefits might also uncover things like insurance coverage for therapy appointments, family and medical leave to focus on caregiving or discounted daily care services for adults.

And online caregiver support groups can provide a safe space to vent. “Caregiving can be a lonely road,” Dr. Blight said. “But the friendships that you develop and the people who support you through these difficult times are often relationships that last beyond the season of caregiving.

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Have You Prepared Your Advocates?

— Estate planning includes naming advocates in your key health and estate documents. But are your advocates truly prepared to make decisions on your behalf? Our expert shows what you need to do.

By

Going through the process of completing your estate planning documents is not an easy process. Working with an attorney to determine what documents you need, how you want the language written so that your assets are handled and decisions are made the way YOU want them, and choosing the best advocates to carry out those instructions can be very involved. No wonder it is a task that many people put off doing – it can be overwhelming!

Common Documents With Named Advocates

The most common estate planning documents that individuals have drafted (and that will require advocates to be named) are the following:



Most clients are so relieved when their documents have been drafted; it is a huge weight off their shoulders to have so many important decisions made and in place. It feels satisfying to have the binder of documents drafted by the attorney in hand and completed.

Perhaps if you are even more “on the ball,” you follow through and get copies of your documents to your financial advisor and update your asset titling and beneficiaries according to the funding instructions provided by the attorney. If you have done that, you are ahead of the majority of clients, most of whom take the big binder home and file it away in a safe place and consider their estate planning completed! But is it?

Have you taken the final step and communicated to those you have chosen as your advocates that you have named them in your documents?

The Importance of Communicating With Your Advocates

It is not uncommon for people to name others as future advocates for them in their legal documents, but not to communicate to them that they have been named. If you’ve ever been in the shoes of being that named advocate, and getting that “surprise” call that you suddenly need to make a life and death decision about someone’s health treatment when you had no idea you were named as their health care advocate and had not had conversations with them regarding their wishes around end of life treatment, you might think differently about having those proactive conversations.

It is extremely important to take this last step, and not only communicate with your advocates that they have been named in your documents but also give them the key information that they will need to fulfill your wishes.

Here is the key information you need to share:

Patient Advocate/Health Care Advocate:

  • Drug allergies
  • Current medications (or where to find your medications list)
  • Your primary providers, your wishes on Code Status (i.e. DNR or full Code), and where your estate planning documents are located
  • Your past surgical history
  • Whether or not there is metal anywhere on your body
  • What your wishes are for end-of-life care and treatments (i.e. aggressive vs. comfort treatment)
  • Plans for future care and any professional relationships and resources that can be used to assist the advocate in their role (social workers, Geriatric Care Managers, etc.)

Durable Power of Attorney/Successor Trustee:

  • Contact information for your professional advisors and, if possible, an introduction to those professionals.
  • Instructions on where to find an “open me first” document (ex. Personal Financial Record System) that details your financial life (bank accounts, investment accounts, insurance policies, government benefits, employer benefits, etc.)
  • Where to find your estate planning documents and a review of your Trust (especially for your successor Trustee, so they have a heads-up on how they might be managing your assets)
  • An overview/general conversation about your wishes regarding handling your assets for future care and your values around money.

Executor/Advocate:

  • Contact information for your professional advisors and, if possible, an introduction to those professionals.
  • Instructions on where to find an “open me first” document (ex. Personal Financial Record System) that details your financial life (bank accounts, investment accounts, insurance policies, government benefits, employer benefits, etc.)
  • Instructions on where to find your Letter of Last Instruction document outlining your wishes for after death.
  • Where to find your estate planning documents, especially your Last Will & Testament, which will be the guiding document for your Executor.
  • An overview/general conversation about your wishes regarding after-death arrangements, about your Will, and how you would like your assets handled post-death, especially if there is no Trust for assets to flow to.

The more information you can share with your future advocates, the better prepared they will be to make the decisions you would want them to make on your behalf should they ever need to serve. An advocate’s job is to be your fiduciary, which means to make decisions in your best interest; without the benefit of having full information on you and your situation, you make it almost impossible for them to do their job to the best of their ability.

If you have taken the time to draft your estate planning documents, our best advice is to complete the process by fully preparing your advocates to serve in your best interest – they’ll be glad you did!

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