Comparatively few African Americans make end of life plans

By Glenn Ellis

The entire lifespan of most African Americans is consumed by efforts to overcome obstacles, inequality, and in many cases, institutional racism.

The most difficult point in this most tiring journey is often the end-of-life. For the disproportionate number of us is when death is accompanied by the dilemmas around how we choose to die.

Hospice; Palliative Care; Advance Directives; and Compet-ency become terms that we, or our loved ones, all of a sudden are faced with and expected to deal with.

Studies and observations show that, likewise disproportionately, we are not prepared for this final stage of life.

What we know is that African Americans are less likely than any other group to be prepared for end-of-life, and not surprisingly, are less likely to have a prepared Advance directive.

First, let’s talk about Advanced Directives. This is the document that should be prepared to outline, in detail, what type of care (if any) we desire as our lives come to an end, and we are not able to make decisions for ourselves.

An Advanced Directive includes things that typically are not even thought about during times when life is good.

Generally, it will include things such as a living will or do-not-resuscitate order, or in identification of a health care surrogate. Regrettably, it’s not until we are in a hospital ICU; Hospice Center; or even on Home Hospice that we (or our loved ones) are confronted with having to make difficult decisions, while dealing with imminent death.

In spite of the fact that studies show that 80 percent of Americans would prefer to die at home, the reality is that 60 percent of us will die in a hospital; 20 percent of us will die in a nursing home; and only 20 percent will end up in a situation where we will be able to make our transition in the comfort and peace of our own home.

If you are not competent, or capable, to make medical decisions but do not have an advance directive, or it is unavailable when needed, decisions will nevertheless have to be made.

In 2013, The Pew Foundation did a study and found that while 73 percent of all Americans have given “some thought” to end-of-life, only 37 percent of African Americans have done the same. This means that doctors and others on the care team of a terminally-ill patient may decide to continue providing care and treatment, when you may feel that your loved one has had enough, and should be allowed to die in peace, with dignity. In the absence of an Advance Directive, this could become a point of contention, and the patient is caught in the middle. Or, it could be the other way around, you may feel that there is still hope for a recovery, and the doctors feel that there isn’t. Again, the patient lies there in limbo, and often suffering unnecessarily. For African Americans, it’s worse. One study found that only 13 percent of all African Americans have an Advance Directive in place.

It can be a difficult, and often, an uncomfortable conversation, but collectively, we have to begin to have conversations during the “good” times in life with our families and loved ones about what we do and don’t want should we ever find ourselves in a position where we are unable to make medical decisions for ourselves.

Think about how often we attend funerals, and families are still reeling over how things came to an end with conflict and contention between families of a patient who died, and the medical staff at the hospital. Think about how different it would be if we made our wishes known, before something happened unexpectedly.

A few things that may be helpful for you in getting an Advance Directive for yourself:

First you need to familiarize yourself with the term: life-sustaining treatments. Nolo’s Plain-English Law Dictionary defines this as “Medical procedures that would only prolong the process of dying or sustain a condition of permanent unconsciousness. A patient who is receiving life-sustaining treatment will die soon, whether or not treatment is administered. Life-sustaining treatment may include a respirator, cardiopulmonary resuscitation (CPR), dialysis, surgery, and other medical procedures.” Would you want any of these? If so, under what circumstances?

Most importantly, let your loved ones know what you have in your Advance Directive. People only like surprises for their birthdays. Don’t wait for them to find out at an emotionally difficult time, when they are grappling with the inevitability of your death.

You don’t need a lawyer to create your Advance Directive. But you do need to make sure you understand the laws of the state you live in regarding Advance Directives. Some states have restrictions that you need to be aware of that may prohibit your wishes.

Complete Article HERE!

AI Could Predict Death. But What If the Algorithm Is Biased?

By Amitha Kalaichandran

Earlier last month the University of Nottingham published a study in PloSOne about a new artificial intelligence model that uses machine learning to predict the risk of premature death, using banked health data (on age and lifestyle factors) from Brits aged 40 to 69. This study comes months after a joint study between UC San Francisco, Stanford, and Google, which reported results of machine-learning-based data mining of electronic health records to assess the likelihood that a patient would die in hospital. One goal of both studies was to assess how this information might help clinicians decide which patients might most benefit from intervention.

The FDA is also looking at how AI will be used in health care and posted a call earlier this month for a regulatory framework for AI in medical care. As the conversation around artificial intelligence and medicine progresses, it is clear we must have specific oversight around the role of AI in determining and predicting death

There are a few reasons for this. To start, researchers and scientists have flagged concerns about bias creeping into AI. As Eric Topol, physician and author of the book Deep Medicine: Artificial Intelligence in Healthcare, puts it, the challenge of biases in machine learning originate from the “neural inputs” embedded within the algorithm, which may include human biases. And even though researchers are talking about the problem, issues remain. Case in point: The launch of a new Stanford institute for AI a few weeks ago came under scrutiny for its lack of ethnic diversity.

Then there is the issue of unconscious, or implicit, bias in health care, which has been studied extensively, both as it relates to physicians in academic medicine and toward patients. There are differences, for instance, in how patients of different ethnic groups are treated for pain, though the effect can vary based on the doctor’s gender and cognitive load. One study found these biases may be less likely in black or female physicians. (It’s also been found that health apps in smartphones and wearables are subject to biases.)

In 2017 a study challenged the impact of these biases, finding that while physicians may implicitly prefer white patients, it may not affect their clinical decision-making. However it was an outlier in a sea of other studies finding the opposite. Even at the neighborhood level, which the Nottingham study looked at, there are biases—for instance black people may have worse outcomes of some diseases if they live in communities that have more racial bias toward them. And biases based on gender cannot be ignored: Women may be treated less aggressively post-heart attack (acute coronary syndrome), for instance.

When it comes to death and end-of-life care, these biases may be particularly concerning, as they could perpetuate existing differences. A 2014 study found that surrogate decisionmakers of nonwhite patients are more likely to withdraw ventilation compared to white patients. The SUPPORT (Study To Understand Prognoses and Preferences for Outcomes and Risks of Treatments) study examined data from more than 9,000 patients at five hospitals and found that black patients received less intervention toward end of life, and that while black patients expressed a desire to discuss cardiopulmonary resuscitation (CPR) with their doctors, they were statistically significantly less likely to have these conversations. Other studies have found similar conclusions regarding black patients reporting being less informed about end-of-life care.

When it comes to death and end-of-life care, these biases may be particularly concerning, as they could perpetuate existing differences. A 2014 study found that surrogate decisionmakers of nonwhite patients are more likely to withdraw ventilation compared to white patients. The SUPPORT (Study To Understand Prognoses and Preferences for Outcomes and Risks of Treatments) study examined data from more than 9,000 patients at five hospitals and found that black patients received less intervention toward end of life, and that while black patients expressed a desire to discuss cardiopulmonary resuscitation (CPR) with their doctors, they were statistically significantly less likely to have these conversations. Other studies have found similar conclusions regarding black patients reporting being less informed about end-of-life care.

However, in some cases, cautious use of AI may be helpful as one component of an assessment at end of life, possibly to reduce the effect of bias. Last year, Chinese researchers used AI to assess brain death. Remarkably, using an algorithm, the machine was better able to pick up on brain activity that had been missed by doctors using standard techniques. These findings bring to mind the case of Jahi McMath, the young girl who fell into a vegetative state after a complication during surgical removal of her tonsils. Implicit bias may have played a role not just in how she and her family were treated, but arguably in the conversations around whether she were alive or dead. But Topol cautions that using AI for the purposes of assessing brain activity should be validated before they are used outside of a research setting.

We know that health providers can try to train themselves out of their implicit biases. The unconscious bias training that Stanford offers is one option, and something I’ve completed myself. Other institutions have included training that focuses on introspection or mindfulness. But it’s an entirely different challenge to imagine scrubbing biases from algorithms and the datasets they’re trained on.

Given that the broader advisory council that Google just launched to oversee the ethics behind AI is now canceled, a better option would be allowing a more centralized regulatory body—such as building upon the proposal put forth by the FDA—that could serve universities, the tech industry, and hospitals

Artificial intelligence is a promising tool that has shown its utility for diagnostic purposes, but predicting death, and possibly even determining death, is a unique and challenging area that could be fraught with the same biases that affect analog physician-patient interactions. And one day, whether we are prepared or not, we will be faced by the practical and philosophical conundrum by having a machine involved in determining human death. Let’s ensure that this technology doesn’t inherit our biases.

Complete Article HERE!

A 16th-Century Manual on How to Die, and What it Teaches Us About Life

Michel de Montaigne urged Western culture to think and talk more about death, but Western culture still hasn’t listened

By Rachel Ashcroft

In his three-volume collection of Essays (1580), the French thinker Michel de Montaigne (1533–1592) famously declared that the best way to prepare for death was to think about it constantly. “Let us have nothing so much in minde as death. At the stumbling of a horse, at the fall of a stone, at the least prick with a pinne, let us presently ruminate and say with our selves, what if it were death it selfe?” Montaigne advised that we must contemplate death at every turn and in doing so, we make ourselves ready for it in the most productive way possible. On a more personal note, I managed to achieve this by spending four years writing a Ph.D. thesis on Montaigne’s work, a task which forced me to contemplate death every single day.

Arguably every Ph.D. dissertation carries with it a certain amount of doom and gloom at some point or other, especially during the last few months of writing up. But studying time in Montaigne’s work meant being constantly steeped in his musings and recollections on how ancient philosophers viewed suicide, or the history of funeral practices in Western Europe. By the time I had finished, I was sure Montaigne was wrong, and that in fact I should never think about death again. The stress and anxiety surrounding my submission date meant that the words of a 16th century nobleman concerning the nature of death were low on my list of priorities. And yet on reflection, thanks to Montaigne and his open and honest approach to mortality, thinking about death has actually taught me a lot about how to live.

Thanks to Montaigne and his open and honest approach to mortality, thinking about death has actually taught me a lot about how to live.

Despite what many of us may think in today’s society, talking about death on a regular basis doesn’t have to be scary or morbid. In fact, it can actually make us feel a much deeper connection to the natural world that simultaneously puts the little things into perspective. After all, mortality is a key feature of pretty much everything that exists in Nature, human beings included. The sun, stars, plants and animals — nothing lasts forever, and Montaigne constantly argues in his writing that this is most evident in the mutable physical processes that occur around us: “The world runnes all on wheeles. All things therein moove without intermission.” Winter storms and snows give way to summer sun, flowers wilt and perish. Even the Sun will disappear one day. As humans we fit perfectly into this cycle; we regularly define our lives in terms of birth, aging and death. Montaigne describes his own aging body using seasonal imagery: “I have seene the leaves, the blossomes, and the fruit; and now see the drooping and withering of it [his body].” However, in the natural world, death always gives way to new life. Leaves fall from trees and die before the arrival of new shoots that burst forth in the spring. When human beings die, their bodies decompose and mingle with the Earth, or sail along the breeze as specks of dust, ready to become part of something else.

Thinking about death in this way really helped me to understand that our lives are only one small piece of a much bigger picture — and the bigger picture doesn’t care about how many Twitter followers a person has, or how much money they earn, or where they buy their clothes. It’s easier to put trivial things to one side when we think about how our death actually confirms a meaningful, physical connection to the world around us — we are natural beings who arguably exist for a certain length of time before returning back to the Earth in some form or another. If you’re a fan of The Sopranos, this attitude is perhaps best summed up by the old Ojibwe saying that Tony finds in his hospital room — “Sometimes I go about in pity for myself, and all the while a great wind carries me across the sky.” The end of our life doesn’t mean the end of Nature’s great cycle. As Montaigne remarks, we can find comfort in the fact that our death is merely one part of a much greater plan: “your death is but a peece of the worlds order, and but a parcell of the worlds life.” His tone is so self-assured in the expression of these ideas that his writing becomes living proof of our ability to master any fear we might have about death. Instead we can allow ourselves to return to Nature.

And yet, talking and writing about death constantly is an approach towards our own mortality that often seems completely alien to modern Western cultures. (Eastern cultures are way ahead and can be looked to as an example.) Nowadays it’s relatively rare to engage in an open conversation with friends or family about how we want to be buried, or what happens to the soul after we die. Often these discussions are relegated to funerals or college philosophy tutorials, or they simply don’t happen at all. But Montaigne states time and again that such avoidance is unhealthy and impractical; instead he declares “let us have nothing so much in minde as death” and regularly draws on ancient philosophy to back up his ideas on confronting death head-on. For example, he uses the Stoic philosophy of the Roman emperor Marcus Aurelius (26 AD — 180 AD) to argue that we should relish spending our leisure time in contemplating the meaning of death. Like Montaigne, I believe it is possible to gain a huge degree of contentment from life through attempting to understand death. As well as feeling closer to Nature, death encourages a greater awareness and enjoyment of the present moment. In a strange way, acknowledging that death is certain actually allows us to adopt a more practical attitude towards the time that we do have on Earth. In her book Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer, Barbara Ehrenreich encourages us to appreciate life “as a brief opportunity to observe and interact with the living, ever-surprising world around us.” Personally, I’ve found myself feeling extremely grateful during times that I have experienced intense happiness, as well as reaching an understanding during periods of sadness that — like everything else — this too shall pass.

By way of contrast, the death-defying attitude of Silicon Valley in recent years provides an interesting case study in 21st-century conversations about mortality. Rather than acknowledging death, a growing number of tech giants are now actively trying to eradicate it. Social commentators argue that modern society is sometimes guilty of believing in its own immutability, as though certain scientific and technological advances give human beings an absolute right to live on forever. Indeed, the cycle of Nature that I described at the beginning of this essay is currently being overturned in order to make way for advances in 3D organ printing, nanobots that can replicate immune systems and even blood injections that supposedly extend our lives. Peter Thiel, one of the co-founders of PayPal, has admitted that he is ‘against’ the idea of death and aims to fight it rather than accept it. The National Academy of Medicine is currently running a “Grand Challenge in Healthy Longevity” which will award $25,000,000 to anyone who can make a major scientific breakthrough in delaying the aging process. Many of the project’s investors want aging to be stopped completely. Meanwhile, Google’s highly secretive Immortality Project was launched in 2014 and aims to treat aging as a disease that can be cured.

There is a distinct air of confidence surrounding these endeavors; for many tech giants it is not a matter of if immortality can be achieved, it is simply a matter of when. Speaking to Tad Friend of The New Yorker, Arram Sabeti of the food tech start-up ZeroCrater once stated, “The proposition that we can live forever is obvious. It doesn’t violate the laws of physics, so we will achieve it.” The “we” in this context is questionable, since many of these projects are being supported by tech giants and celebrities who will undoubtedly be the only people able to afford an immortality cure if it ever becomes available in the future. These advances are being energetically pursued by people who head up large corporations with arguably little thought or respect for death itself, only the right to continue existing. This isn’t accepting death or preparing for it, this is trying to abolish it in the unhealthiest way possible — surrounded by secrecy, with little thought for the long-term effects on society. Such measures do nothing to cure fear of death, they only try to stop it at all costs, which is really just a form of denial.

What would the author of the Essais have made of these developments? Montaigne was famously suspicious of doctors during a time when modern medicine simply didn’t exist. He often complained that doctors were desecrating the natural duration of the human body and interfering with what he considered to be Nature’s work. Even in an age before painkillers or anesthesia, Montaigne (who famously suffered from excruciating kidney stones) was proud of his ability to withstand illnesses and diseases ‘naturally’: “We are subject to grow aged, to become weake and to fall sicke in spight of all medicine.” Therefore it’s very hard to describe the horror Montaigne would have felt upon being confronted with the idea of death-defying technological advancements such as nanobots and 3D organ printing. Not only are these inventions a human attempt to subvert death by artificial means, they also pose other problems too. For millennia, one of the most positive aspects of death originally proposed by Stoic philosophy (and later adopted by thinkers such as Montaigne) was the idea that death comes for everyone. In other words, it doesn’t care about social class — the rich human being dies just like the poor human being and thus reminds us that deep down we are all equals. Will that be true in the future as well or not? Cryogenic preservation is becoming more and more popular, but it currently costs as much as $200,000 to freeze the entire body. We have to imagine that a drug or injection to cure mortality will be ten times as costly. This means that immortality will most likely be for the few, not the many.

So what can we as human beings do to respond to death in a practical and healthy manner? Alongside the popular take-up of meditation and mindfulness (which psychologists have already noted can greatly improve our attitude towards death), a younger generation of advocates — most notably Caitlin Doughty — are heading up an increasingly popular “death-positive” movement. This trend encourages an enquiring approach towards death and funerary practices that draws on the type of calm, reasoned manner that Montaigne would have been proud of. Doughty’s website, The Order of the Good Death, states that the death-positive movement believes that “the culture of silence surrounding death should be broken through discussion, gathering art, innovation and scholarship.” This mission resounds with the philosophy of Seneca the Younger (4 BC — 65 AD), a thinker Montaigne turned to repeatedly when he wanted to understand fear of death. Seneca believed that approaching death through contemplation, mindfulness and discussion was one of the key virtues of wisdom; pursuing such an open and honest attitude towards death would eventually allow an individual to patiently wait for death, as one of nature’s operations. Therefore talking about death, studying philosophy, meditating, and even creating or appreciating art around this theme are all excellent ways to prepare for life’s end.

Talking about death, studying philosophy, meditating, and even creating or appreciating art around this theme are all excellent ways to prepare for life’s end.

We can also make sure to engage in practical preparations surrounding our funeral arrangements, wills and life insurance. Rather than becoming a depressing chore, instead we can appreciate that it brings peace of mind to family and friends, as well as ourselves. If we’re lucky enough to be dying in a bed somewhere, surrounded by loved ones, at least we can rest assured that these same people have been taken care of. In the Essays Montaigne praises the practical act of constructing your own grave — many of his friends prepared elaborate tombs, sometimes with their own death masks attached. Montaigne says that looking on a replica of your own dead face is an excellent way to prepare for the inevitable reality of the future and also shows you have taken the time to leave the world in an organized way. Incidentally, this is just one example which demonstrates that in the past, Europeans were far more attentive to the idea of preparing for death in a practical manner. Admittedly this may have something to do with the fact that death was far more visible in everyday life thanks to mass graves and public executions, not to mention the high rates of mortality, particularly amongst infants. Thankfully all of these things are in the past, but death still lingers in society, it’s just slightly more hidden away than it used to be. Whilst we can’t all afford a good death mask, it would be comforting to see a resurgence in openly discussing or enacting any kind of practical preparation for death, an attitude which has clearly been written out of European society in the last few hundred years.

In the Essays, death is natural. It forces us to realize our humble place in the great cycle of mutability that constitutes the workings of Nature. In the meantime, talking, writing and thinking about death can radically improve our quality of life by helping us to gain a greater enjoyment out of our time as one of the living, as well as helping those people we will eventually leave behind. I don’t want to start investing in cryogenics or constructing my own coffin just yet, but talking about death from time to time? That’s something we can all start doing right now.

Complete Article HERE!

Health care fellows learn the tough task of discussing death and dying

Foundation’s fellowship program aims to expand number of health professionals skilled at discussing end-of-life issues with patients

By Gary Rotstein

Each Monday night for eight weeks, the group of aspiring physicians, pharmacists, social workers, medical ethicists and other future health care professionals met for three hours to talk about death — for the purpose of being better able to talk about death.

The 33 post-graduate students and other trainees spent time at a residential hospice, hospital and nursing home. They heard from palliative care doctors, geriatricians and other specialists. They talked with relatives of those who had died. They practiced end-of-life conversations with one another.

And by their last meeting this month, the participants in the Death & Dying Fellowship of the Jewish Healthcare Foundation learned how to broach a difficult topic with terminally ill patients and those individuals’ loved ones — a topic for which their formal studies typically provided minimal preparation.

“When you’re in front of a family crying their eyes out, it’s a whole different game,” said participant Tamara Means, a former medical resident who admitted that her past nervousness addressing such issues probably only made things worse for some seriously ill patients.

She and others learned during two months how, among other things, to listen better to patients and families; to look for cues that they’re ready to face up to mortality; to bring up death-related discussion in a non-judgmental way that respects different cultural values; to be able to consider emotions in addition to medical skills and technology.

The fellowship is one of a variety of Jewish Healthcare Foundation programs intended to promote a better end-of-life experience, including more personal planning and decision-making by those affected. The foundation’s officials believe the medical profession needs to do more to help patients address the potential failure of curative treatment, with too little taught about end-of-life conversations in medical school.

If existing practitioners won’t take the lead in helping seriously ill people prepare for their final stage of life, the foundation is counting on the field’s newcomers to do so. Since launching the annual Death & Dying Fellowship for that purpose five years ago, the program has drawn far more interest than officials anticipated, with all of its available slots filled again this year.

“You’re our apostles — 30 to 35 people who will go out and help hundreds of others learn how to talk about death and end-of-life,” foundation president Karen Wolk Feinstein told them April 1.

“There’s a lot more that can and should be done” in the way of core training in school, Michael Barkowski, a second-year medical resident at Allegheny General Hospital, agreed afterward while citing the confidence he gained from the fellowship program. “No matter what field we go into, we’re all going to work with patients who have chronic diseases and end-of-life illnesses.”

Some 2.7 million Americans die each year, and most die under medical supervision in a hospital or nursing home rather than in their own residence. Those who die at home have frequently been hospitalized late in life themselves.

So most individuals have interacted with medical professionals before death, but the fellowship program’s instructors say both sides often ignore end-of-life discussion, such as how much intensive treatment a patient would want if there’s minimal chance of benefit.

It’s easier to just avoid a topic that makes everyone uneasy, Robert Arnold, medical director of the UPMC Palliative and Supportive Institute, told the fellows at their final session. He noted that patients are fearful about the end of their lives and doctors lack incentives to discuss it.

“We collude not to talk about it,” he said, although palliative care specialists such as he have more time and training for that purpose.

“There’s nothing natural about this,” Dr. Arnold said while coaching his young listeners to make end-of-life care part of their professional “identity.”

They should be good listeners as to the expectations of patients and families, he said, and then offer themselves as guides to the decision-making that eventually will be required. Their knowledge, if shared properly, can assist patients in weighing the merits of more procedures versus more comfort.

Alexandria Abdalla, who is pursuing a master’s degree in bioethics from the University of Pittsburgh, said she always has had a fascination with death but knew little before the program about how to discuss it professionally. She said she has learned how to “read between the lines” of what patients are saying and acknowledge their emotions.

She put that to use recently when shadowing a geriatric oncology doctor at one of UPMC’s hospitals. Ms. Abdalla was left alone with an elderly woman temporarily after the doctor left her room. The patient mentioned her fears about her prognosis, and instead of trying to talk her out of it, Ms. Abdalla simply listened.

“Then I told her, ‘I’m sorry what you’re going through is so difficult — I wish we weren’t in this position,’” Ms. Abdalla said. “She seemed to appreciate just having someone to listen.”

Dr. Barkowski, the 29-year-old AGH resident who plans to specialize in palliative care, said he now better understands how to build relationships with patients prior to such a serious conversation. In a recent visit with a family in the hospital’s intensive care unit, he sought no quick responses when laying out the options for an elderly woman with advanced breast cancer.

“I went into it without any agenda like previously, when I might have wanted a decision within one meeting,” he said. “We talked every day for the next few days. … We were journeying together, like Dr. Arnold was saying — you’re an educated guide helping them understand the medical things happening, how severe things are, what the limits are of what we can do, learning about the patient’s values and aligning treatment with those.”

Ultimately, a decision was made to discontinue treatment — the patient had reached the point of requiring kidney dialysis on top of other issues — but it was in a manner that her family understood, accepting it as the right decision for the patient, who died within days.

“It’s all about building trust,” Dr. Barkowski said. “The listening is where everything starts, and the fellowship was able to build on that.”

The Jewish Healthcare Foundation expects to sponsor the fellowship again in early 2020 for individuals pursuing health care-related careers who are in graduate school or medical training. Application information will be made available later this year on the foundation’s website.

Complete Article HERE!

‘End Game’ Film Shows the Struggle in End-of-Life Decisions

The Oscar-nominated documentary also spotlights palliative and hospice care

By Deborah Quilter

In a pivotal scene of the documentary End Game, we listen in as a team of palliative care professionals discusses Mitra, a 45-year-old woman who is dying of cancer. Should they approach her about hospice? The hospital chaplain urges the group not to bring it up. She had spoken to Mitra’s mother, who told the chaplain that to Mitra, hospice means death. Dr. Steven Pantilat, a palliative care specialist, agrees with her assessment, noting: “Healthy people want to talk about how they want to die. Sick people want to live.”

This exchange in End Game (available on Netflix) captures human nature, and the delicate dilemma doctors and patients face at the end of life, under the best circumstances. Filmed in the serene hospital rooms and corridors of the University of California San Francisco Medical Center and the recently-closed Zen Hospice Project, situated in a tastefully-appointed Victorian house, we see firsthand the inner workings of hospice and palliative care.

We also see clearly how important it is to talk about these matters before we might need them.

Considering Palliative and Hospice Care

Though palliative and hospice care can greatly ease suffering, they are not easy to talk about or decide on for many patients. Some of the people in the 40-minute documentary are not ready to check out and seem to feel that accepting hospice care would mean accepting death. Their family members don’t want to let them go either.

Mitra’s husband hopes each new treatment will bring a miraculous recovery. Her mother knows her daughter will never walk again, much less recover from cancer and thinks her daughter is suffering. In one scene early in the movie, which is doubtless replicated in many hospital rooms every day, Pantilat asks Mitra’s husband and mother if they want to continue treating the cancer.

“If she were clear in her thinking and seeing herself in her bed the way she is right now, what decision would she make?” Pantilat asks. The question hovers in the air.

When Mitra’s sister flies in from Switzerland, initially there is jubilation over the reunion and we rejoice vicariously with the family. In the next scene, however, we see the sister collapsing in her mother’s arms in the hallway, weeping. Later, we see Mitra’s mother literally staggering down the hallway under the weight of her sorrow. We witness Mitra’s husband’s heart breaking, and their 8-year-old son playfully massaging his mother’s bald head.

There is joy, sorrow, love. The camera captures it all, but there is no narration. We witness the family’s struggles as they go through them in real time. This is part of the film’s power: It is easy to identify with the subjects. Viewers might feel they are losing their own family member.

The Filmmakers’ Vision: Bring Death Out of the Closet

The 40-minute film, directed by Rob Epstein and Jeffrey Friedman, was nominated for an Oscar in the category of Documentary Shorts.

The filmmakers, who won an Oscar in 1985 forThe Times of Harvey Milk, wanted to raise awareness about how palliative and hospice care can give us the right care at the right time. As Friedman explained, birth and death are universal life passages, and of those, death is the one we have the option of facing consciously.

“Most of us avoid thinking about it until it’s too late. By doing that, we set ourselves up to lose control of our life story when we’re at our most vulnerable,” Friedman says. “Couple that with medical technology so advanced that we can keep nearly everyone ‘alive’ using machines — but without taking the time to talk about what the quality of that life will be. The result is that far too many people are getting care they don’t understand and don’t want.”

End Game is about choices we make about how we want to live, when we know our time remaining will be brief,” Epstein adds. “One of our goals in End Game was to inspire conversations — not only about facing death, but about how we want to live, right up to the end.”

End-of-Life Care Explained

According to Pantilat, author of Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers, “Palliative care focuses on improving the quality of life for people with serious illness (whatever the prognosis). It alleviates symptoms like pain, shortness of breath, fatigue and nausea. It’s also about having patients communicate preferences and values, so the care team can attend to their psychological, spiritual and emotional support when they are sick.”

In the United States, hospice is a service to provide palliative care to people, largely at home. For hospice, the eligibility criteria include a prognosis of no more than six months of life and patients and loved ones who have agreed the focus will be comfort care.  Hospitalization, generally, will be avoided.

“Most of the time, hospice is not a place, but a service, although there are facilities focused only on hospice care (as Zen Hospice Project was). All hospice is palliative care, but not all palliative care is hospice,” Pantilat explains.

Many people have the misconception that once you choose palliative care, you’re not getting any other treatment for your illness. “That’s not true at all,” Pantilat says. You could have palliative care alongside chemotherapy, bone marrow transplant and many other serious illnesses. In fact, palliative care might help you live longer.

“There’s never been a study that showed that people who receive palliative care live less long. And there are studies that show that people who receive [palliative care] for the illness live longer. It’s an unmitigated good.” Pantilat says.

Help for the Family, Too

There’s another important feature of palliative care: It also attends to a dying person’s loved ones. The palliative care team will talk to family members and offer them comfort, options and counsel.

Pantilat notes: “When people ask, ‘When should my family come?’ I always say come now. If they get better and live for another six months or year or two, no harm, no foul. It’s one more visit. But if you try to time it when they’re really sick and on death’s door, they might be too sick to have a meaningful interaction or you might miss the opportunity. Things can happen suddenly.

“We try to have these conversations in advance and understand what’s really important,” Pantilat continues. “If visiting with your sister or seeing your daughter get married is the most important thing to you, now’s the time to do it. Maybe you shouldn’t wait 10 months for a wedding, because you may not make it. Instead, could your daughter move the wedding up to next month?”

And speaking of not waiting, the doctor has a message: “If you or a loved one has a serious illness, you should have palliative care. Don’t take no for an answer. Because it will help you live better and may even help you live longer.”

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