Category: Advance Directives

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How to Plan for the End of Life With Cancer

— Reflect on your wishes ahead of time to help ensure they will be followed.

By Susan Kreimer

No one can predict exactly how long you will live with cancer, whether you have metastatic stage 4 disease (cancer that has spread to distant organs) or a less advanced stage. No matter where you are in your cancer treatment, end-of-life planning can ease some of the burden on you and your loved ones. If you take time now to reflect on your wishes, you can increase the chances you’ll achieve the outcomes you want.

Soon after any cancer diagnosis is a good time to consider end-of-life planning. Your doctor can answer questions about your prognosis, including what the realistic options are and what those treatments can achieve, says Steven Pantilat, MD, the chief of the division of palliative medicine at the University of California in San Francisco.

Laura Shoemaker, DO, the chair of palliative and supportive care at Cleveland Clinic, adds, “Care planning, ideally, is about planning for the entire trajectory of the illness, including but not limited to end of life.”

This can be done at any time and should be tailored to your needs.

Reflect on Your Values, Priorities, and Wishes

This reflection process can be difficult to initiate, but will be well worth it. It should include talking with your family, caretakers, or even a counselor.

“Each person’s plan will be a reflection of their lives, values, and personal priorities,” says Kate Mahan, LCSW, an oncology social work counselor in the Canopy Cancer Survivorship Center at Memorial Hermann the Woodlands Medical Center in Houston.

“It is often helpful to think of this as a series of discussions instead of a single talk,” she adds. “While we all know that no one lives forever, it is often very challenging to consider our own mortality.”

End-of-life planning allows your healthcare team to understand what matters most to you, says Mohana Karlekar, MD, the section chief of palliative care at Vanderbilt University Medical Center in Nashville, Tennessee.

It’s important to think about expressing your end-of-life wishes in writing if your cancer has progressed, or you’re experiencing more complications from your treatments.

This may be the time to ask yourself where you would prefer to spend your final days — for instance, at home or in a hospice house, says Eric Redard, a chaplain and the director of supportive care at High Pointe House, part of the Tufts Medicine Care at Home network, in Haverhill, Massachusetts.

Do you want to accomplish anything special? Is there a meaningful place for you to visit while you’re still mobile? “The list is endless,” says Redard.

Appoint a Decision-Maker

By communicating openly with your healthcare team, you can make more informed choices about the medical care you want if the time comes when doctors and family members have to make decisions on your behalf.

One of the most important end-of-life decisions for any person with a cancer diagnosis involves selecting someone who will be a voice for you when you can’t speak for yourself.

“Ask yourself, who would I want to make decisions for me? Anyone with cancer could — and should — do that,” says Dr. Pantilat.

Your choice can be enforced through a durable power of attorney for healthcare. It’s a type of advance directive, sometimes called a “living will.” This document names your healthcare proxy, the person who will make health-related decisions for you if you can’t communicate them to your providers.

Write Advance Directives

Outline your wishes in advance directives. The following are decisions you may want to consider including in these documents, says Redard. 

  • Tube feeding Nutrients and fluids are provided through an IV or via a tube in the stomach. You can choose if, when, and for how long you would like to be nourished this way.
  • Pain management It’s helpful for advance directives to include how you want the healthcare team to manage your pain. You can request as much pain-numbing medicine as possible, even if it makes you fall asleep, or just enough to reduce pain while allowing you to remain aware of the people around you.
  • Resuscitation and intubation You may decide that a do-not-resuscitate (DNR) order is right for you. This is a medical order written by a doctor that informs healthcare providers not to perform cardiopulmonary resuscitation (CPR) if your heart stops beating. Similarly, a do-not-intubate (DNI) order tells the healthcare team that you don’t want to be put on a ventilator if your breathing stops.
  • Organ and tissue donations You may want to specify that you want to donate your organs, tissues, or both for transplantation. You may be kept on life-sustaining treatment temporarily while they’re removed for donation. To avoid any confusion, consider stating in your advance directive that you are aware of the need for this temporary intervention.
  • Visitors You may wish to make it known in advance who will be able to see you and when. This may include a visit from a religious leader. For some people, such a visit can provide a sense of peace.

Even if you write advance directives, it’s a good idea to discuss them with everyone involved in your care. “There is no substitute for meaningful conversations with loved ones and medical providers about one’s care goals and preferences,” says Dr. Shoemaker.

The advance directives can also specify if you would like to receive palliative care.

Choose Palliative Care

“Palliative care provides symptom control and supportive care along the entire disease continuum, from diagnosis of advanced cancer until the end of life,” says David Hui, MD, the director of supportive and palliative care research at MD Anderson Cancer Center in Houston.

It treats a range of symptoms and stress issues such as pain, fatigue, anxiety, depression, nausea, loss of appetite, and nutrition. 

“We generally advise that patients with advanced cancer gain access to specialist palliative care in a timely manner to help them with their symptom management, quality of life, and decision-making early in the illness trajectory,” says Dr. Hui.

The goal of this approach is to provide an extra layer of support not only for the patient but for loved ones as well, especially family caregivers, according to the Center to Advance Palliative Care. It is appropriate at any age and at any stage of a serious illness, and you can receive it along with curative treatment.

Consider Hospice Care

Hospice care is one branch of palliative care. It delivers medical care for people who are expected to live for six months or less, according to the Hospice Foundation of America.

You may decide to consider hospice when there is a major decline in your physical or mental status, or both, despite medical treatment. Symptoms may include increased pain, significant weight loss, extreme fatigue, shortness of breath, or weakness.

Hospice can help you live with greater comfort if you decide to stop aggressive treatments that may have weakened you physically without curing your cancer or preventing it from spreading. Hospice care does not provide curative therapies or medical intervention that is intended to extend life.

A hospice care team often includes professionals from different disciplines, such as a doctor, nurse, social worker, chaplain, and home health aide. This team can guide you in managing your physical, psychosocial, and spiritual needs. They also support family members and other close unpaid caregivers.

Find Comfort at the End of Life

Finally, remember that end-of-life planning isn’t solely about medical care. It’s also a time when you will need emotional support. So, consider mending broken relationships, surrounding yourself with pictures of family and friends, and playing music that soothes your soul.

“People can write letters to loved ones, forgiving them or reconciling,” Redard says.

End-of-life planning is a topic people tend to shy away from, but it removes the burden from those left behind. “Once it’s over,” says Redard, “there’s relief.”

Complete Article ↪HERE↩!

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Breaking the ‘Widow Rules’

— I’ve lost two wives and I know there can be a better end-of-life experience and a better grieving process

By Jill Johnson-Young

When I tell my “how I got here” story, the usual responses are sad looks and a weird sigh that most seem to think fits responding to loss. You know that experience, especially if your partner has died. It’s one the grievers I work with learn to loathe.

It’s confusing when you smile in response. You are supposed to be sad, perhaps a bit hopeless, and, very possibly, needy. You have a role to play. And while we may be sad at times, we need to smile and feel capable just like everyone else.

Actors in the movie Steel Magnolias in a funeral scene. Next Avenue
Like the cemetery scene in the movie ‘Steel Magnolias,’ research shows that families experiencing terminal illness need humor in those around them.

You can insist that you are treated as a couple, not a caregiver and patient.

After the losses I’ve experienced on the ‘bingo card’ of life, my take on how to do illness, dying and grief is a bit different.

Working in hospice as a social worker and administrator added to that shift, and quite possibly to my sense of humor in talking about it. Hospice staff have a bit of a twisted sense of humor simply to survive, but we don’t take it out to share in public. We should. Research shows that families experiencing terminal illness need humor in those around them. Remember the cemetery scene in the movie “Steel Magnolias?”

A Need to Take Control

They also need a sense of control. Dying is not like the movies; it takes work, but there can be some magic in the end. It needs to be actively managed, not something that takes control of your life: the couple should make the decisions, with education, great hospice care and setting boundaries to preserve their roles.

You can insist that you are treated as a couple, not a caregiver and patient. You should be allowed to use your anticipatory grief together to finish your relationship, and to say goodbye in a way that works for you.

Terminal illness can be sneaky. You cope with the disease process and adapt, over and over. And suddenly that ongoing disease is now going to be terminal.

My first wife, Linda, survived metastatic breast cancer — but died of pulmonary fibrosis a decade later from chemo. My second wife, Casper, (yes, she was named after a friendly ghost) died of Lewy Body Dementia. Think Robin Williams, but not the funny part. That started with a weird assortment of symptoms that were repeatedly misdiagnosed. Her final diagnosis was months before she died, and only after I asked if that was what we were dealing with.

It was managing their illnesses and symptoms that allowed control over some of the craziness that is today’s medical system. (That, and being an outspoken wife who is also a social worker, much to their dismay at times.) I am not alone in that experience.

Steps to Take to Manage a Loved One’s Illness

So how do we manage facing ongoing illnesses that have the potential for becoming life shortening?

  • Document! I know, it takes time, and it feels unending. It’s hard to look at the words. Do it anyway. What are the symptoms throughout the day? What level is the pain? What works? What doesn’t? Who have you talked to? What have you been told? Take a medical notebook with you to every appointment.
  • Write a summary for doctor’s visits. Use bullet points for easy reading. Write down what you need from the visit. Expect care that meets your needs and follow-up.
  • Find an online community of caregivers/patients. They get it, where others will not. And they share survival humor.
  • Get your advanced directives done. Get paperwork in order: A POLST (Physician’s Order Regarding Life Sustaining Treatment), trust or will, caregiving plan, end of life plan, memorial plans. Consider hiring a private end of life doula. There are some great books out now (“I’m Dead, Now What?” is popular). The National Funeral Directors Association has some helpful resources about having hard conversations. Unfinished plans and paperwork make things harder, and take away your control when others step in to do them for you.

What happens when the illness gets worse? It would be nice if doctors would tell us that our loved one is now considered terminally ill, but the reality is many will not. Many physicians do not tell families or patients when an illness is no longer treatable. Some will mention palliative care to open the conversation, but won’t say hospice.

The National Hospice and Palliative Care Organization offers information about hospice care; hospice can extend life because a good care team reduces stress, and the support provided allows the patient and family to use their energy on quality of life, not battling insurance companies, pharmacies and unrealistic expectations of one another.

Complete Article ↪HERE↩!

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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.

By

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.

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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.”

Complete Article ↪HERE↩!