As a Death Doula for a law firm, I have had the experience of attending many different deaths. Some deaths are attended by families, who stand at the bedside in stunned and awkward silence, waiting for the inevitable; while some families talk about trivial events, like politics, football, argue, or start discussing probate matters over the dying individual.
Some of our clients have come into my care after they have already become incapacitated. Because they have no family willing or able to serve as their healthcare agent, they find themselves alone and I have no way to converse with them about their final wishes.
In rare cases, I have been hired by thoughtful individuals who are aware of the need for a death advocate throughout the active dying process. A Death Doula is an advocate for the dying individual and the family to help facilitate and process what is occurring.
Most everyone has experienced a funeral, but not everyone has attended a death. Thus most experience comes by viewing the dying process from the living perspective. I want to share several aspects of death and dying that may not be expected.
You may not know death is imminent. I recently had an unusual experience where my client was in full organ failure and was being kept alive by medical intervention. In reality, there was no way they could save his body but he was mentally 90% clear when he was able to be awake. I had worked for this veteran for the last five years as we had begun planning for his inevitable demise and continued support of his wife.
The doctor may not explain, in direct, plain terms when death will happen. Granted, the doctor may explain the “likelihood” that death could occur, but one cannot 100% predict the outcome or the time frame in which these things occur. Many people don’t have the bandwidth at this emotional time to read between the lines to figure out what is being said. If you are lucky you may have a Death Doula or family member who is willing to spell out the actual possible outcomes. In one case, I had to inform my client he was dying even though he wasn’t aware of the severity of the situation and didn’t want to die. I needed my client to verify that his wishes, which we had spent years discussing, were still to be enacted.
As you pass you might not have the ability to communicate clearly. While your brain may be clear your body may not be able to communicate effectively. Or, it may be that you speak and move effectively but your brain is being affected to such a degree that its information is not reality. In both cases estate planning documents and an agent capable of carrying out your wishes can be extremely valuable.
A dying person wants to be gently touched. While this may not be true in every case, in my experiences with the elderly or people passing with chronic illnesses, it is true. Skin-to-skin interaction is psychologically, emotionally, and physically supportive in all ages. If you are not the hugging type there are many things you can do that can provide comfort and support. Consider that the dying is possibly unable to communicate what is uncomfortable for them but also may be physically sensitive. I suggest gently washing their feet, arms, and hands, lightly applying lotion, brushing their hair, light massage through the sheet, holding their hand or gently massaging their head/shoulders. Lightly rubbing the back, anything you do should be for short periods. I deeply recommend touch interaction. There is nothing more intimate than the emotional transference between the dying and the doula as being able to provide some support and deep acceptance of being touchable (and therefore loveable) even at death.
What are your cultural, religious or family death traditions?
No matter how much we prepare or plan, a natural death is likely a messy, spontaneous experience with unexpected situations and unalterable results. Nature is like that. Everything in this world dies in its way. Not only do plants, animals, and people come to an end but so do stories, relationships, seasons, actions, ideas, beliefs, dreams, illness, pain, growth, even weather, and environments.
Birth and death are the bookends of life. You had no control over your birth experience and yet, while we can prepare ourselves and our families and friends for death on financial, spiritual, and emotional levels, most are not interested in developing that practice. Conversations and exploration into your death culture and burial options help bring the foggy unknown into clear hopes and wishes that you and your family/community can enact.
Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’
BY Gina Van Thomme
It can be challenging to find the best ways to support a friend or family member with terminal cancer — that is, cancer that can’t be cured or has stopped responding to treatment.
You want to support your loved one, but not overwhelm them. You want to be there for them, but also give them space. You want to say the right thing, but perhaps have no idea what that is.
To help, we asked senior social work counselor Malory Lee for advice on supporting a loved one with terminal cancer.
Be present, even if you don’t know what to say
It can be hard to find the right words to say to a loved one with terminal cancer. But often, showing up with a listening ear is far more important than knowing exactly what to say.
“We don’t have to have an answer. We don’t have to even know what to say all the time. And we don’t have to be worried about saying the right thing all the time. I think most important is just being there,” Lee says.
Don’t be afraid of silence, either. Lee says resisting the urge to fill silence can give both you and your loved one the time and space to understand and process what you are going through.
Allow yourself to feel complex emotions
A terminal cancer diagnosis can understandably bring a variety of emotions. These might include sadness, fear, anxiety, anger, shock, hopelessness and existential dread. Lee says all of these emotions are perfectly normal.
Another common emotion is anticipatory grief, which Lee describes as grief for an expected death that hasn’t happened yet.
“A lot of the time, it’s really the exact same experience as grief. It can feel the same and be just as intense as the grief we experience after a death,” she says.
Although these emotions can be uncomfortable, Lee notes it is important for those with cancer and their loved ones to feel them rather than ignore them.
While navigating emotions surrounding a terminal cancer diagnosis, Lee encourages caregivers to be aware of persistent hopelessness or suicidal thoughts which may point to depression. If you or a loved one is experiencing depression, reach out to a doctor or counselor for support.
“Going through grief and dealing with terminal cancer does not mean we have to feel depressed,” she says.
Avoid statements that compare or minimize someone’s cancer experience
Lee suggests avoiding excessive positivity or statements that start with ‘at least’ when discussing terminal cancer. While phrases such as “At least you had this time to prepare” or “At least you have time to spend with loved ones” may have good intent, Lee says they can minimize the pain someone with terminal cancer is experiencing.
Similarly, approaching a loved one’s terminal diagnosis with too much optimism and positivity can have the opposite effect.
“It may discount a real emotion that someone is feeling and might make them feel like they can’t share what they’re actually going through,” Lee says.
While it can be tempting to share stories and reassurance, Lee also recommends avoiding comparison.
“Every person’s cancer story is so unique; you could even be dealing with the same cancer as someone else and just have a very different experience,” she says. “Listen to the person in front of you, listen to their experience, ask questions about what they’re going through rather than trying to bring in your experiences.”
And what if you do say the wrong thing? Simply acknowledge it, apologize and move on.
Help without being asked
“Let me know if you need anything” can sound like a helpful way to support someone with cancer, but it can also create work.
“It puts the burden back on the person with cancer to determine what they need or ask for help,” Lee says.
While being mindful of your loved one’s wishes and boundaries, consider little ways to help. Lee says this might look like dropping off dinner, helping with cleaning or errands or delivering groceries.
“If you feel there’s something you can do to make things easier, go ahead and do it,” she says.
If you’ve learned that a friend or acquaintance you haven’t spoken to in a while has terminal cancer, you might be wondering whether it is OK to reach out.
“As long as you show genuine care and concern, and again, respect their wishes, I think that’s fine, and can often be very much appreciated,” Lee says.
Keep including them
It might feel like cancer changes everything, but it doesn’t need to alter the way you spend time with a loved one.
“Don’t assume that someone with terminal cancer doesn’t want to do something or won’t be willing or able to join a gathering,” Lee says.
Lee notes that cancer can feel very isolating and, while many times patients are met with lots of support right after their cancer diagnosis, that support may dwindle over time. She encourages loved ones to keep reaching out to a friend or family member with cancer, even if it means finding new ways to accommodate physical limitations.
This might look like playing games together online, gathering closer to a loved one’s home or simply continuing to extend invitations even if your loved one has had to miss events in the past.
Don’t be afraid to talk about difficult topics
Cancer can feel like the elephant in the room, but loved ones don’t need to pretend it doesn’t exist.
Instead, Lee says to let your loved one take the lead in determining what topics are off-limits.
“If a person is uncomfortable sharing or talking about certain things, or if they don’t want to, respect their wishes,” she says.
But if someone with terminal cancer is open to discussing a range of topics, it is OK to ask about health or even end-of-life plans. Lee says having these conversations, while difficult, can ensure you are accommodating a loved one’s wants and needs.
“It’s very critical to make sure we are honoring those wishes. And we can’t honor those wishes unless we know what they are,” she says.
Remember to take care of yourself
Lee recommends caregivers find a support system outside of the loved one they are caring for so they can process their emotions. She also encourages caregivers to take small breaks, even if they are only mental rather than physical.
“There’s no need to feel guilty to take time away to do something that’s truly for you,” she says.
Caregivers can find self-care resources and community by joining MD Anderson support groups or connecting with someone else who’s been there through myCancerConnection, our one-on-one cancer support community.
Finally, Lee says that it is possible – and healthy – to experience happiness during a difficult experience.
“Sometimes we think when we’re grieving or when we’re caring for a loved one who is ill, we have to be sad all the time, and that’s just not true,” Lee says. “In a healthy grief experience, we do experience the full range of emotions, and our feelings often come like waves. It’s perfectly healthy and normal to feel joy and happiness also while we’re grieving.”
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.”
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
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.”
Philosopher Philip Reed defines “terminalism” as discrimination against dying, people or treating terminally ill people worse than they would expect to be treated if they were not dying.
Examples of terminalism include denying necessary medical care to dying people based on cost, prioritizing life extension over quality of life in allocation protocols, and granting experimental treatments only when conventional options have failed.
Reed argues that terminalism is unjustified and highlights the importance of recognizing the rights and value of dying individuals as human beings.
When you are dying, you are placed in a hospice. Often, this is a real, brick-and-mortar hospice with palliative care and psychological support. At other times, though, the hospice is a metaphorical one. The terminally ill are ignored by those too awkward or scared to face them. They are told not to work or exert themselves in the slightest. Dying people exist as ghosts and live in the hinge space between society and “on the way out.” When you’re told you’re going to die, you become invisible.
This has led the philosopher Phillip Reed to coin the expression “terminalism.” For Reed, terminalism “is discrimination against dying people, or treating the terminally ill worse than they would expect to be treated if they were not dying.” In other words, it involves treating those in a hospice — literally or metaphorically — as second-class citizens.
Here we look at three examples of terminalism and consider to what extent, if at all, it can be justified.
How quickly are you dying?
It’s both trite and existentially invigorating to say, “We are all dying.” If life is seen in terms of a finite number of heartbeats, we are all ticking our way to the grave. But if we are to discuss the rights of the terminally ill, we need to define “dying” a bit more closely. Reed discounts those who are likely to die in the extremely short-term; there is little to be said about discrimination against someone on an operating table or who is bleeding out on a battlefield.
Reed argues that those who will die imminently are not “socially salient,” which is to say that their state of dying will not be long enough to affect social relationships, social norms, or legal attitudes. As he puts it, “because membership in the group is, by definition, extremely short-lived, it cannot play a role in a wide range of social contexts for any one person.”
Therefore, if we are talking about discrimination as a social phenomenon, we have to talk about those who have been terminally ill for long enough to experience some kind of discrimination. Reed more or less settles on the established legal position of the U.S. and many in the West, in which “terminally ill” is defined as anyone who will die in the next six months from an illness.
Everyday terminalism
In an article for the Journal of Medical Ethics, Reed goes on to list examples of terminalism in our legal and social systems. Here, we look at three.
Too expensive to bother. If you want to receive hospice care, which is overwhelmingly palliative, you have to be in the last six months of your life. Yet, if you receive hospice care, you will stop taking (or not be offered) life-prolonging drugs, even when those drugs have palliative effects. Why bother wasting money extending someone’s life when their death is inevitable? What’s more, 78% of American hospices turn away patients requiring high-cost care. But, as Reed says, “There is a strong social consensus that people should not be denied necessary medical care simply based on the cost, and yet this happens regularly for dying people (at least if they also need hospice care).”
Allocation protocols. During COVID, most hospital systems developed rules of allocation for life-saving drugs and apparatuses. Those who were dying were at the bottom of the list. When an institution is suffering from limited healthcare resources, such as organs for transplant, they will often be biased against the terminally ill. Reed criticizes protocols that prioritize life extension over quality of life, as they implicitly undervalue the immediate needs of dying patients.
“Right to try” laws. While these laws ostensibly empower terminally ill patients to access experimental treatments, they also highlight a paradox. They grant a certain freedom only when the patient has been deemed beyond the help of conventional medicine, potentially relegating them to the status of test subjects when traditional care options are exhausted.
Reed suggests a useful thought experiment to highlight the prejudices in each case. He writes: “It is easy to see the discrimination if we change the eligibility criteria to another socially salient group: if we said that [the above applied] exclusively for racial minorities or trans people, the message would be that we do not care about protecting racial minorities or trans people.” We do not care about protecting dying people.
Justifying terminalism
Reed believes that a lot of people will find it somewhat ridiculous to call these instances a kind of discrimination. When presented with limited resources, surely it’s better to focus on those who have longer to live? In other words, isn’t it okay to value longevity over the moribund?
Reed calls this a structural “terminalist prejudice,” with little philosophical justification for it. He argues that “many of us tend to think, explicitly or implicitly, that a worthwhile life involves both the kind of life that has a future and also enables a person to ‘contribute meaningfully’ to society.”
We don’t want to see ourselves as cruel or prejudiced. We don’t want to accept that we are privately and socially devaluing human life based on our terminalist biases. Dying people are human beings as well. They have brothers and sisters; sons and daughters; or wives and husbands. They read books, watch TV, talk, laugh, and reminisce. If all humans have rights, dying people have rights, too. They are valuable in themselves, not for some abstract, unknown “contribution” they might make. As Reed puts it, “The reason that terminalism matters is that dying persons matter.”
Native Americans, I read recently, have a rather beautiful concept called “second death”. The first death is when breath finally leaves the body; the second is when someone says your name for the last time.
This is not entirely dissimilar from the notion at secular Australian funerals of “celebrating” a life. Stories, humour, sorrow and love honour the lamented lost, and help cement them in our memories – they too live on, in a sense, while they are remembered.
In her book A Better Death, oncologist Ranjana Srivastava notes how unprepared most people – even those aged in their 90s – are for the end of their life.
What surprises me is how often non-believers make remarks like “she’s in a better place now” or “he’ll be looking down from above” – a paradoxical cultural legacy from the Christian belief in heaven.
Yet perhaps it is not really surprising. After all, belief in an afterlife is near universal across cultures from the earliest times, as evidenced by prehistoric grave sites – it’s utterly fundamental, which is a form of evidence.
Non-believers tend to reject the idea of an afterlife as mere wish fulfilment, but their rejection could equally be understood the same way, for example, as a reluctance to admit the possibility of judgment. (This is the thought of the Christian version of the “second death”, described in the New Testament book of Revelation.)
The atheist understanding, like the Christian’s, is entirely a matter of faith – no categorical evidence exists either way, though Christians can point to the biblical accounts of the post-resurrection appearances of Jesus.
Melbourne oncologist and writer Ranjana Srivastava, in her compassionate and thoughtful book A Better Death, notes how unprepared so many people are to die who have never thought about mortality and cannot accept it – even people in their 90s.
Having supported so many people of various ages and circumstances as cancer takes their life, she writes that many suffer a sort of existential pain – denial, absence of meaning, recrimination, regret – that can be as hard to bear as the physical aspects.
The urgent thing, she says, is to reflect before we age. “Dying well is about treating ourselves and others in the last act of life with grace and goodwill,” and there can be many moments of happiness, fulfilment and discovery that give meaning to life.
Death is today’s great taboo. People may not fear death, but they dread the process of dying. As Woody Allen quipped, he’s not afraid of dying, he just doesn’t want to be there when it happens.
These days, it seems, we all want to die painlessly in our sleep, preferably unexpectedly with no suffering beforehand. This is a stark contrast to previous centuries, when people wanted time to settle their affairs, take their leave of loved ones and, in particular, prepare to meet their maker.
Perhaps that’s a better death, both for the dying and for those they leave behind.
Rosalynn Carter, whose unflagging advocacy for mental health reform and on behalf of human rights, democracy, and health programs redefined the role of a president’s wife, died on November 19 at age 96.
Half a year earlier, her family had shared publicly that Rosalynn had been diagnosed with dementia. She began receiving hospice care — i.e., end-of-life comfort care for patients and caregivers — at home in Plains, Georgia, two days before her death and died there peacefully.
Her husband, former President Jimmy Carter, also opted to receive hospice care nine months ago after multiple medical problems landed him in and out of the hospital. Although his family thought he was in his last days when he made the choice, he has surpassed expectations. “Rosalynn was my equal partner in everything I ever accomplished,” he said in a statement on the day of her death.
It’s not clear why the couple were in hospice care for such different durations. But in that difference are echoes of a nationwide phenomenon: The way hospice is paid for — and the way eligibility is determined — makes it a good fit for people with terminal illnesses with predictable end-of-life courses, like cancer. But for Americans with dementia, hospice care often becomes available much later in the illness than it’s needed — or is offered and then withdrawn repeatedly over the course of a long decline in health status.
To be clear, there’s no evidence this was Rosalynn Carter’s experience. But as both Carters’ end-of-life choices have drawn attention to hospice care and the value it can bring, it’s worth looking at who it works for, and who it doesn’t. The truth is that the US’s current hospice model doesn’t serve people with dementia as well as it could. Here’s why, and what could make it better.
Hospice care focuses on symptom relief and support for dying patients and their families
Many Americans hear “hospice” and think it’s equivalent to giving up.
In fact, hospice care is a type of medical care that centers a patient’s goals — and provides support to their caregivers — when they’re nearing the end of life. And as Jimmy Carter has so transparently shown us, the shift in care can be surprisingly nourishing.
In the US, the hospice approach and the mechanism to pay for it are two different things, explained Carolyn Clevenger, a professor and nurse practitioner who leads a dementia care clinic at Emory Healthcare in Atlanta. “There’s the hospice philosophy,” she said, and “there’s the hospice benefit.” This is what makes hospice care so different from other treatment approaches in the US: It not only prioritizes comfort over cure, but it also switches the patient over to a totally different insurance plan, often called the hospice benefit. (Medicare, Medicaid, and most private insurance plans have a hospice benefit.) As a result, all the care, supplies, and equipment a hospice organization provides its patients is generally fully paid for by the benefit.
The approach focuses on providing symptom relief rather than curative treatment. It generally includes a complete package of services to care for both the physical and emotional symptoms that come with nearing the end of life, and it provides support for both the patient and the family. A person in hospice care could get specialized medical equipment, such as a hospital bed, some home care, and in-home nurse visits. They and their families also benefit from social worker services, grief counseling, and spiritual services.
Hospice care reduces what insurers pay for care at the end of life. People in hospice typically don’t receive much pricey in-hospital care, so even though their insurer pays for a lot of other services, they ultimately save money. A study published earlier this year by NORC showed that for Medicare beneficiaries who got hospice care in their last year of life, Medicare spending was $3.5 billion less — more than 3 percent lower — than it was among those who didn’t.
But those cost savings don’t come at the expense of the patient’s well-being. In the same study, patients and families in hospice reported better quality of life and pain control, less physical and emotional distress, and less prolonged grief.
Lots of patients with longer life expectancies would benefit from hospice care, but can’t get it paid for
The hospice benefit makes important services available for seriously ill patients and their families. But to qualify for it, a person needs to have a life expectancy of less than six months. Where does that leave people who need the same services, but don’t have as grave a prognosis?
For people whose serious illness causes them a lot of symptoms and their caregivers a lot of strain, the broader field of palliative care — of which hospice is sort of a subset — can be extremely helpful, even when the life expectancy is relatively long. But in the US, the difference is that while palliative care can prescribe these services, it cannot generally pay for them the way the same services are paid for when they’re provided under hospice care.
In the US, there’s a stark difference between what regular insurance plans pay for and what hospice pays for. So unless they qualify for hospice, it’s hard for many Americans to get the full benefit of a comfort-oriented approach without breaking the bank. That’s complicated by the fact that doctors, patients, and caregivers often have a difficult time approaching conversations about the end of life.
The result of linking hospice access to a six-month prognosis leads to both overuse and underuse of the benefit, said Clevenger. Overuse comes into play when providers fudge a prognosis to get badly needed services that hospice provides for a patient who might not be terminally ill. Underuse happens among terminally ill people whose end-of-life planning has been delayed.
By the time they qualify for hospice, people with dementia look very different from people with other terminal illnesses
What makes things particularly challenging for people with dementia is that it often progresses at a slower pace than other life-threatening conditions. By the time they get to the point where they qualify for hospice, they are much sicker than with other conditions, and their family is under much more strain than the families of others.
hat means “that person and that family’s experience is going to look very, very different from almost every other person who elects the benefit,” said Rory Farrand, vice president of palliative and advanced medicine at the National Hospice and Palliative Care Organization (NHPCO).
It’s a little easier to understand if you compare dementia with a condition like cancer. When a person with cancer runs out of curative options (like chemotherapy or radiation), health care providers can usually predict how many months they have to live within a reasonable margin of error. In many cases, people with the condition are still relatively functional at the time a provider tells them they have less than half a year to live.
It’s different for dementia, said Farrand. Dementia symptoms usually progress slowly, and there is no definitive treatment that cures it. According to the federal government’s criteria, to have a life expectancy of six months or less, people with dementia “basically have to be at a very, very, very, very advanced aspect of the illness — meaning that you are bedbound, you’re incontinent of bowel and bladder, a person has very few meaningful words,” said Farrand.<
By that point, a person with dementia has likely been unable to function independently for a long time. Their caregivers — usually, their family — will have been bearing the strain of helping them dress, bathe, eat, and care for themselves for years. Additionally, the person has lost so much of their ability to make decisions that they can’t participate in their care.
The services hospice provides are often really helpful to people with dementia and their families. In the last month of their lives, people with dementia in hospice care receive what their loved ones feel is better care, and experience less sadness or anxiety, compared with those not enrolled in hospice.
So while the care patients and families receive once they’re in hospice is helpful, it comes much later than it would need to if it were to really alleviate the immense caregiving burden that often comes with dementia.
Here’s what would better serve people with dementia and their families
Congress created Medicare’s hospice benefit in 1982. Since then, medical science has gotten better at preventing or treating a variety of diseases that commonly cause death in older adults, including cancer, heart disease, and lung disease. That means people are living longer — which means more of them are getting old enough to get dementia. If current population trends persist, more than 9 million Americans will have dementia by 2030, and 12 million by 2040.
Those people and their caregivers are going to need a lot of support, said Larry Atkins, chief policy officer at the National Partnership for Healthcare and Hospice Innovation. Unless people are insured by Medicaid, or have paid for long-term care insurance, they don’t have coverage for long-term care, he said.
Because it offers such supportive, wraparound care that provides for both the patient and the family, “hospice is the ideal care model,” said Atkins. But its requirement that eligibility hinge on a six-month prognosis means it’s unavailable to many of the people who would most benefit from it — including people with dementia.
Instead of relying on prognosis, said Atkins, hospice eligibility should depend on how sick a person is, how much help they need with daily activities, and how vulnerable they are to disease or death.
One way the US could make hospice’s benefits more available to people with dementia is by providing them under an expanded and more generously covered version of palliative care services — what Ben Marcantonio, NHPCO’s CEO, calls “community-based palliative care.” In this scenario, people would be able to access all of the good things hospice provides at whatever point their disease becomes burdensome to themselves and their families.
The Community-Based Palliative Care Act, a bipartisan bill introduced earlier this year, aims to make more of the services typical of hospice available to people who are still receiving curative treatment.
It’s worth noting that the US has tried this model, and it works: Several years ago, a handful of sites in the US trialed the Medicare Care Choices model, which allowed people to get hospice services while also receiving curative treatment, and it worked great — there was still plenty of cost savings, and high family and patient satisfaction.
Meanwhile, families can do some things to maximize the likelihood that the existing hospice benefit better serves them in the event of life-threatening illness, said Farrand. “Don’t be afraid of having conversations with your loved ones about what their wishes, goals, and values are as it pertains to their illness,” or how they’d want to live their lives if they were diagnosed with a serious illness.
And if they’re in the midst of a serious illness, they should ask for a palliative care consult, said Marcantonio. People sometimes misunderstand palliative care as “giving up,” said Farrand, but both palliative care and hospice involve “aggressively ensuring that your quality of life is what you want it to be — that you can live the best you can, even while living with a serious illness,” she said.
“If anything, it’s the absolute opposite of the idea of giving up.”
— Poland finds a new way to celebrate life – and death
Mourner Malgorzata (right) thanks celebrant Emilia Mandes for a perfect funeral: ‘Maybe I’ll go on such a journey myself …’
More and more Poles are turning away from traditional funeral rites. But what can replace them? Enter the Institute for the Good Death, grief doulas, ‘death cafes’ and music by Whitney Houston
By Katarzyna Piasecka
“Then, feeling really sorry for himself, he exclaimed: ‘There is fucking nobody to help me,’” reads Emilia Mandes, and the crowd bursts into laughter. They look at each other, nodding – this story has already become a family legend. But this is not an anecdote about a drunk uncle at a wedding. I am at a funeral: a special ceremony to say goodbye to Jan Ledwoń, who died in October at the age of 74.
Despite taking place in Elbląg, a medium-sized city in the north of Poland, it doesn’t feel like a typical Polish funeral. Instead of wreaths, people have made donations to a local animal shelter; instead of dirges, Leonard Cohen’s Tonight Will Be Fine is playing; and instead of a formally robed and solemn priest, there is Mandes, a professional celebrant, dressed modestly in black, and hugging the family and friends.
We are in a humble chapel next to the cemetery, with about 30 mourners, including Ledwoń’s daughter Kasia, who reached out to Mandes and organised most of the funeral. The chapel has allowed only half an hour for this farewell, but it is enough time for Mandes to deliver an emotional and moving speech about Ledwoń. As well as honouring his coarse language and crisp sense of humour, it reveals things that his friends weren’t aware of – that his parents wanted him to become a priest, for instance. Or that, when his father died, he promised his mother that he would replace him.
Such a ceremony is still a rarity in Poland, a predominantly Catholic country, in which the church has monopolised the celebration of most rites of passage. Although fewer and fewer Poles participate in religious rituals, they are still reluctant to give up traditional church ceremonies such as funerals or children’s baptisms. But recent years have brought changes: the Catholic church is in crisis and many Poles are turning to non-religious forms of spirituality, and as in other countries, there is now a growing “death positive” movement.
“The first ceremony I officiated at was the funeral of my husband. He died by suicide,” says Mandes, 47. “I wanted to respect his wish, in his final letter to me, to disappear unnoticed and avoid the ‘church circus’. Moreover, both of us left the institution a long time ago and our children are not connected with the church either.”
Mourners escort Jan Ledwoń’s ashes to the grave in Elbląg, northern Poland.
Mandes explains that her husband had depression, which he refused to acknowledge. It eroded their marriage and she decided to move on. “And then he decided to move on, as well,” she says. Two weeks spent with her husband in hospital in a coma gave Mandes time to think about how to organise his funeral. It was winter 2021, in the middle of the Covid lockdowns, so she had to negotiate limitations. But the main question was, if not a priest, then who would officiate at the ceremony? “I Googled Polish secular celebrants and knew my husband would haunt me if I hired one of them. They were more like celebrities than celebrants,” she says. “So, I decided to do it myself.”
A former audiobook reader with some acting experience, she harnessed her writing skills to concoct a unique speech for her husband, and her acting skills to deliver it. She even used the occasion to raise awareness about depression. “Afterwards, people commented that they hadn’t realised a funeral could be so beautiful, so personal. Some time later, a friend told me that being a celebrant could be a profession and this is how I got to know the Institute of the Good Death,” she recalls.
Anja Franczak, 39, founded the Institute of the Good Death in 2020, after losing a child in 2015 and realising that society offered few tools to cope with the grief. She then discovered the roles of grief doula, end-of-life doula and celebrant, and trained in all three in Germany. “Doula” comes from the Greek word for “a woman who serves”, and is popularly associated with birth doulas, who help mothers navigate the beginnings of life. But the need for assistance with end-of-life matters has become more and more salient.
A grief doula is a non-medical professional who supports individuals or families experiencing loss. They help them to come to terms with death, navigate emotions arising from grief, and deal with practical issues, such as fulfilling the deceased person’s will. An end-of-life doula, in turn, guides a dying person through the process of passing and supports those important to them. Like a grief doula, they also help people come to terms with death, and deal with administrative issues such as planning a funeral. They also help communities recognise death as a natural and important part of life. A celebrant complements the doulas, supporting mourners and organising a farewell ceremony that honours the departed person.
End-of-life doulas Katarzyna Boni, Anja Franczak and Magdalena Siwecka (left to right), about to start a workshop on the circle of grief.
While training, Franczak started sharing the experience on her blog and received a lot of reactions from people who were fascinated by this new, fear-free approach to dying. Death is a taboo subject in Poland, as it is in many countries. According to research, 33% of Poles don’t think about it at all, and 27% very rarely.
“I don’t avoid death: on the contrary, I seek contact with it. My perspective on life has changed,” Franczak wrote on her blog. “I want to talk about life with the knowledge that we’re all going to die. I believe that this awareness offers us a chance to live an intense life in line with our values, to open up to a deep experience of being human and to have relationships full of respect, acceptance and love.”
Together with like-minded people she met along the way, Franczak created a grassroots collective that morphed into the Institute of the Good Death. Today, it has more than 100 members, including professionals from the funeral industry, experts in medicine and palliative care, psychologists, journalists, scientists and artists. They organise courses, lectures, meetings and events such as “death cafes”, informal open meetings during which people can talk about loss and grief.
Their aim is to foster conversation and education about end of life, death and grief in a sensitive and supportive way. The institute also aspires to transform the culture from one in which death is absent or censored into one that draws from transience for our benefit, to enrich and enliven us. “We want to empower people to keep each other company in life and in death,” says Franzcak. “To raise awareness that we do not necessarily have to outsource all things concerning dying to institutions. We can deal with many things ourselves.”
The institute does not oppose the church or tradition, she stresses: “Many Poles value these religious, Catholic rites. We are open to collaboration with priests.”
One notable aspect of the institute is that it attracts mainly women; few men have participated in courses or events. “Maybe it’s because, for some reason, topics of life and death, childbirth and dying are closer to women,” says Franczak. Mandes suggests it might also be down to a difference in socialisation between men and women, “and the fact that what we do at the institute is perceived as care work, historically associated with women”.
Emilia Mandes conducts the humanist funeral ceremony of Jan Ledwoń.
Back in Elbląg, after the ceremony, Mandes invites mourners to the cemetery, where Ledwoń’s ashes will be returned to the soil. “He chose the forest as a place to say goodbye to this world. It leaves us in pain. If you feel that you want to tell him something, recall some memory, thank him for something, get angry about something, forgive him for something, you may express it with a metaphorical letter in the form of an autumn leaf,” she says.
As orange and red leaves fall on to Ledwoń’s grave, Mandes plays one of his favourite songs, Whitney Houston’s I Will Always Love You. This is the saddest moment of the funeral and Ledwoń’s widow, Magda, bursts into tears, hugging her husband’s photo in her arms. “You may now get closer to the family and hug them,” encourages Mandes, and the crowd clings together, forming a swinging mass.
“It is one of these rare experiences that really unite people,” Mandes says later. “It’s incredible how we are able to bond when we stand together in the face of death. It is above all divisions, all polarisation.”
A few days earlier, on 1 November, it was All Souls’ Day, a day when Poles do commune with the dead. On this day, Polish cities are typically deserted, but the cemeteries are bursting with life. Trains and motorways all over the country fill up with those travelling to visit the graves of the departed, and necropolises are covered in flowers and flickering candles. It is a time reserved for family and friends, and for remembering those who have died.
The Wind Phone Booth, where mourners can ‘communicate’ with those who have died.
As dusk falls, Warsaw’s historic Powązki cemetery becomes as busy as an airport. People who have come to visit graves mingle with those collecting money for charity, and vendors of candles and chrysanthemums. The place is dotted with booths housing priests selling commemorative masses.
But Mandes is not there. “I’m not going to the cemetery today,” she told me. “I don’t like crowds and I want to show my children that a connection with the dead is not limited to one day in the year.” Instead, across the city from Powązki cemetery, in the Osiedle Jazdów – a cultural commune housed in tiny houses in the centre of Warsaw – she is preparing an “open grief ritual” organised by the institute. This small ceremony is aimed at helping people honour and remember the deceased and engage in the process of letting go. Wading through autumn leaves in a small public square, Mandes and two other celebrants place lit candles in various corners and set up a microphone. A dozen participants observe them curiously. Some of them use the Wind Phone Booth, an imitation phone box installed by the institute in May 2022, where mourners can “communicate” with those who have died (the line is not connected to anything).
“I will give each of you a ribbon. It will be your bridge to your departed person and will let you connect with them,” says one of the celebrants, and divides the group into small circles. After a moment of awkward silence, each of the circles starts resounding with words, and soon with sobbing. “I wanted to thank you for being such a great auntie …”, “I wanted to say sorry that you couldn’t die in your beloved flat …” As the stream of words intensifies, I cannot believe that these people are able to show such vulnerability despite being complete strangers.
Mistress of ceremony Dominika Gauza offers blue ribbons as a symbol of connecting with a loved one who has passed away.
“I came here exactly for that,” says Monika, 44. “I am not ashamed – I want to cry among strangers.” She explains that she knew about the ritual from social media. “It is a relief to discuss emotions concerning death and grief that in Poland have been suppressed for years,” she adds.
The ritual led by Mandes and her fellow celebrants is vaguely reminiscent of the pre-Christian Slavic rite of Dziady (Forefathers’ Eve). This “communion of the living with the dead” involved gathering in houses to feed wandering souls with honey, barley, eggs and vodka. It was an occasion to share grief with the living and talk to the dead.
At the end of Ledwoń’s funeral, as his sister-in-law Marzena and her husband Jerzy say their goodbyes, I ask them what they thought of the ceremony. “I loved it,” says Jerzy. “I’m enrolling my name in Emilia’s agenda.”
“Not so fast,” says Marzena. “You still have a couple of dozen years to live.”
