A Good Life And A Good Death…

What Is Palliative Care?


Palliative care is a growing specialty that provides comfort care and that teaches patients and doctors how to talk about patients’ goals for life with serious disease and how to prepare for a good ending.

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“He will not die on your watch.”

That’s what the family of a patient told Sunita Puri when she was a resident in internal medicine. They were chilling words for the young doctor as she took over the care of a very sick man on the overnight shift.

To Puri, the patient, who had widespread metastatic liver cancer, appeared to be dying. She tried to talk with the family about forgoing heroic measures, to let him have peace in his last hours. But they were adamant.

“Do everything,” they told her. Hours after admitting him to the intensive care unit, she was overseeing chest compressions to revive him after his heart stopped. “I was blinking back tears,” she recalls. The man died that night.

Few people would say they want to die while undergoing painful last-minute resuscitation or while hooked up to machines in a hospital. Yet it’s the death many Americans end up with. Now a palliative care doctor at the University of Southern California, Puri is fighting for an alternative.

In her new book, That Good Night: Life and Medicine in the Eleventh Hour, Puri writes about how palliative care specialists are working to change medicine from within — teaching other doctors how to talk to patients about their hopes and fears, not just their disease and treatment. Palliative care, she says, gives doctors, patients and their families a new vocabulary with which to talk about the way life’s goals can shift when you have a serious illness and how to plan for a good final chapter.

We spoke with Puri about the field of palliative care and what patients need to know.

This interview has been edited for clarity and length.

What is palliative care, and how is it different from hospice?

Palliative care is attending to the physical, emotional and spiritual suffering of patients and families who are dealing with a serious illness. Hospice is a type of palliative care that we provide in the last six months of life. And I would say hospice is even distinct from end-of-life care, which is really the care of patients in the last days and hours of their lives.

In our country, hospice is overwhelmingly provided in a patient’s home or in a nursing home, whereas palliative care is available at any stage of an illness. And so we can see people in the hospital; we can see people in clinics when they come to see their oncologist or their cardiologist. With palliative care, you can have us on your team just right alongside care like chemotherapy or dialysis — we’re meant to attend to your quality of life. And in an ideal circumstance, we will be there when you decide to transition to hospice.

How common is it now to have palliative care specialists available?

There’s actually very few of us, and many of us are concentrated in the big cities. So in rural areas or in nonacademic teaching hospitals, there’s definitely a shortage of palliative care docs around the country. Our presence and the need for us is growing though. So for example, the American Society of Clinical Oncology now has a recommendation that at the time of diagnosis of a serious illness, palliative care should be involved. Patients with a serious illness can ask for a consultation with the palliative care team if their other care providers don’t bring it up, either in a hospital or a clinic setting.

We have studies that show that for patients with, for example, metastatic lung cancer, if they got palliative care right alongside their cancer treatment — as opposed to just getting cancer treatment alone — the patients actually lived longer and had better quality-of-life scores.

What other advantages does palliative care offer?

I think the emotional and spiritual aspects of it are actually some of the most important supports that we can offer our patients.

One thing my patients tell me a lot is, “Thank you for listening.” And I think there is something about our field — focused on being silent and listening to people — that is deeply therapeutic for the vast majority of my patients. To say, “I’m going to be with you through this whole journey, no matter what the outcome with your treatment, and work with your other doctors to make sure we’re all on the same page about what therapies may or may not actually be helpful to you in the way that you define helpful.” I think there’s something pretty magical about that.

You wrote that when you found palliative care, you were finally able to become the kind of doctor you wanted to be. What did you mean by that?

I grew up the daughter of an anesthesiologist — she was always my first model for what a doctor should be. My mother is very technically skilled, but she is also deeply devoted to the idea that every human being is kind of an embodiment of the divine who she felt she was in service to. So, she really had this beautiful intertwining in her practice of being very scientific but also being very spiritual — being able to take people to the operating room and control their physiology to get them through an operation but also understanding that the body and nature has its limits.

And that’s what I wanted to be: somebody with the technical and scientific command of medicine but who understood that every human life is different from the other. In my medical training, there were so much focus on the technical and scientific aspects. But as I was learning those things, I was not also learning how to talk with someone who has a serious diagnosis. How do you explain to them how their life might change? How do you ask, if this is not something that we can cure, “What would be really important to you in the time that you have?” And this language was not given to me in medical training.

When people get a diagnosis like cancer, they sometimes talk about “being a fighter” or “fighting the disease.” Why do you find that kind of language problematic?

When we think of disease as a battle to fight, you kind of divide people into winners and losers — which is not a mentality I think benefits them.

What’s dangerous is that when we’re talking about a fight, if someone chooses not to “continue to fight,” then people will often tell me, “I feel like I’m giving up.” I have to reframe that for them to say, “You may be a fighter, but your body cannot fight this anymore. Can you hear that distinction between you and the natural limits of your body?” I have found that to be incredibly potent because people can see that this isn’t a personal thing.

You know, you did not deserve to get this horrible bout of heart failure, and your not “beating it” is not your fault.

What are the consequences for doctors and for the patient’s treatment of using this kind of language?

I think people feel an obligation, if they identify as a fighter, to keep trying any and every treatment offered to them — sometimes without a full appreciation of the risks of those treatments or whether those treatments might keep them in a place they don’t want to be, like an intensive care unit, instead of having the opportunity to go home. I think that sort of “fight or give up” mentality is such a toxic binary. And I’ve seen people suffer tremendously because they felt that if they said no to therapy, that they would be letting other people around them down.

From my perspective, when I was in my residency, when I heard those words, I then felt obligated to offer anything and everything to the patient or family — even when I knew that certain treatments were not going to help them but could very well hurt them. So I think hearing those words almost put a stop to any real in-depth conversation about what someone is hoping for and what realistically we as physicians can offer them to fulfill those hopes.

I still regret the ways that I offered therapies to patients that I knew would not be in their best interest. But I didn’t know how to talk about another way when I was in my training.

What kind of therapies might be harmful or not be in their best interest?

Being in a clinical trial is one example of a therapy people often feel they need to take but may not truly be in their best interests if it, for example, requires them to uproot their life and go elsewhere. Or if it has side effects that we may not really know about, because part of the trial is to figure out what the toxicities are.

And the other scenario I’ve seen is people in the ICU with an overwhelming infection or a set of post-surgical complications, and they’re suffering one complication after another, especially if they’re elderly. And we can keep trying to manipulate their physiology, using very powerful medications and machines, but we’re not always as attentive to what someone’s life would actually look like if we were successful in reversing some of the problems that they’re going through.

So when a palliative care team is involved and you have these kinds of difficult discussions early on in a serious diagnosis, what can a good outcome look like for the patient?

The advantage of getting to know people and their family early on when they first get a diagnosis is that we can really help them through their treatment. To think about and articulate what’s most important for them if a specific treatment doesn’t work or if it takes a huge toll on their quality of life. And when we can have those discussions, then a happy ending might be that they have their pain, their shortness of breath, their nausea, all of those things exquisitely well controlled. And they decide on their own terms when to transition, for example, to hospice.

When I was a hospice doctor, I think the best situations were when people were still able to be themselves and participate as much in living as they could — even though their bodies were failing. They could still be cognitively intact. Their symptoms were well controlled. They were in a place they wanted to be in. They were living their lives on their own terms for however long they had. And that to me is what a good ending can look like.

Even other doctors don’t always understand what palliative care is or embrace it. What do you think the obstacle is?

I think doing what we do in our field is a little bit of the rejection of our culture’s idea of what medicine exists to do. I think the public thinks of doctors as heroes that can beat diseases and extend lives. And in many important ways we are heroes. Surgery is safer. Childbirth is safer. We’ve eliminated certain infectious diseases almost entirely because of vaccines. But I think we are not good at knowing what to do when we can’t fix a problem.

For patients who have a terminal diagnosis, what advice would you give about how to decide whether or not to opt for some of the more extreme life-sustaining measures, like going on a ventilator or a feeding tube?

In planning ahead, I always encourage people to think about the quality of life that they value. What are the things that they would be OK not doing? And what are the things that if they couldn’t do them would make their life extremely difficult — maybe even not worth living? And if people can think about their values and their goals in broad strokes, the broad strokes can help inform the more specific question about CPR or a ventilator.

I encourage families to really look to their doctors to guide them. And to say, if there’s a question about going on a ventilator, “Is this for a reversible condition, as far as you can tell, doctor? Or am I taking a gamble, a big enough gamble that he may be stuck on the ventilator forever, and then I would have to make the decision to stop? Tell me more about that.” I think being able to ask your doctor openly and not feel alone in making some of these weighty decisions is extremely important. So there are those two components of it: thinking yourself, “What is the sort of life I value? What would be a life that would be too hard for me to live even with the help of medicine?” And to talk to your doctor, even if you’re healthy right now, because you want to prepare for the storm.

Complete Article HERE!

Research shows psilocybin — a Schedule I narcotic — to be of great help to patients with end-of-life problems


Guided LSD session at Johns Hopkins University.

“People in this country don’t talk about death. When I would talk about it sometimes with people they would say, ‘Oh be optimistic! Don’t talk that way. You’re gonna be fine.’ You really need to look at it (death) and this is the perfect way to do it.”
Ann Levy – psilocybin-assisted psychotherapy study participant

I remember the ride home being really quiet. Typically, my mom would be driving me nuts, loudly singing old Methodist hymns, rather than letting us listen to music on the radio. But this time she just drove silently as my grandmother, Lillian Brustad, stared out the window of our well-traveled station wagon. We had just left my grandmother’s oncology appointment in Rochester, New York and we were heading back to her home in Hamilton. There was no discussion about the appointment, no talk about any diagnosis, no ‘next steps’ and no ‘why me’s?’ What was said was said in a meeting with my mother, my grandmother and her doctors.

I’d break the silence with my repetitive pre-teen complaints as to why we should have stopped in Rochester, rather than waiting until Syracuse to pull into a Friendly’s restaurant for a Jim Dandy sundae. I’d debate from the back seat that stopping in Rochester would have made me full and happy. Stopping would have better allowed me to finish this book report on Mickey Mantle that I was putting off.

When I wasn’t complaining; there was silence…

We made many more trips to Rochester over the next few years. My grandmother remained stoic in her battle against cancer, despite it wreaking havoc on her physical body, eventually taking her life.

The final months of life are often marked by increasing physical and emotional suffering. As one approaches death, we often experience varying degrees of depression, hopelessness, anxiety, and a desire to hasten death. The prospect of our loved one’s looming death can lead to feelings of defeat, helplessness, and despair in family members and within the patient’s medical team.

How do you want to die? Most people hope to die at home, with their loved ones, but sadly an overwhelming majority of us die in a hospital or extended care home surrounded by beeping equipment.

What would a good death look like? Anthony Bocelli, PhD, is a palliative care psychologist and investigator in a study conducted at the NYU School of Medicine on the use of psilocybin-assisted psychotherapy to help patients and families deal better with end-of-life distress.

“Death needs to be humanized,” he says. “Although the end-of-life can be profoundly difficult, it can also trigger a search for meaning and an openness for the sacred.”

Maria Sabina called psilocybin mushrooms her ‘saint children.’ Sabina was the Mazatec curandera/healer that banker Gordon Wasson sought out to learn the secrets of ‘magic mushrooms.’ Sabina introduced Wasson and his wife Valentina to teonanácatl; the Psilocybe mushroom. ‘nti-ši-tho in Mazatec, meaning the ‘Little-One-Who-Springs-Forth’.

Wasson went on to famously detail his psychedelic experience in Life Magazine, introducing these sacred mushrooms to the Western world. Albert Hofmann, discoverer of LSD and chemist at the Swiss Sandoz Laboratories, isolated psilocybin in 1957 from mushrooms collected by Wasson’s team on their second trip to Oaxaca.

These sacred mushrooms have been used for millennia by indigenous cultures around the globe for healing and insight. Psilocybin-assisted psychotherapy melds this ancient sacred wisdom with modern day scientific technology. I am not talking here about eating a bag of ‘shrooms and tripping at a rock concert; this is about the therapeutic use of this valuable tool in a controlled setting under supervision by trained guides to help combat depression, addiction, and existential distress.

So why psilocybin mushrooms and why now? It has been said that psychedelics could be to psychiatry, what the microscope is to biology or the telescope was to astronomy. Bear in mind that telescopic science was prohibited in 1616 for over 100 years, in fear that people may discover that planet Earth was not the center of the universe.

Alicia Danforth, Ph.D, served as investigator on a psychedelic research study at Harbor-UCLA Medical Center examining the safety and efficacy of psilocybin as a treatment for advanced-cancer anxiety. She remarked, “It’s very important not to lose sight of the fact that research with psychedelic medicines has been going on for thousands and thousands of years. As long as there has been humans really. What’s new is when you get into the Western medical model.”

Dr. Danforth worked with Dr. Charles Grob on an important pilot study at Harbor-UCLA Medical Center on 12 patients who were facing end-of-life from advanced stages of cancer. Subjects were administered a placebo (niacin) during one session and the other session they received psilocybin.

I had the pleasure of discussing the study and their findings with Dr. Danforth. “Our participants were really near death. Some did not survive the six-month follow-up period,” she said.

Dr. Danforth detailed that they administered “one session at a low-to-moderate dose because we were the first cancer-treatment study in a new wave of psychedelic-assisted therapy and the FDA was really conservative. The main purpose for these little pilot studies is to establish that they are safe and is it even achievable. Does it work?”

The other studies that I will cite in this article worked with higher doses of psilocybin. However, Danforth stated that, ‘even with one session of preparatory psychotherapy session before (treatment day), then a really supported session on the day of treatment, then therapy afterwards, our study found a reduction in anxiety and a trend toward a reduction in depression.” She continued, “It’s more important to look at the trending that leads to larger studies so you can make stronger claims. We saw positive trends and there was a significant difference in the anxiety scores. The qualitative outcomes were good; the safety data were good. We didn’t have any serious adverse events and everything was green light go for the larger studies.”

As Danforth mentioned, humans have been conducting research for thousands of years on psychedelics. Prior to prohibition of these substances in the late sixties, there were more than a thousand studies conducted with more than 40,000 subjects and many showed positive trends.

During the 1960’s, Dr. Eric Kast, from the Chicago Medical School utilized LSD for a series of studies working with cancer patients encountering death. Several hundred advanced-stage cancer patients were administered LSD. Findings showed trends toward pain reduction for several weeks, relief of depression, improved sleep, and a lessened fear of death. Dr. Kast noted that some of these individuals showed a striking disregard for the gravity of their personal situations. They frequently talked about their impending death with an emotional attitude that would be considered atypical in our culture.

Another important study by William Pahnke from the Maryland Psychiatric Research Center, in Baltimore conducted a study that was published in the Harvard Theological Review in 1969. His work examined the psychedelic mystical experience in the human encounter with death. He found, “The most dramatic effects came in the wake of a mystical experience.” He reported a decrease in fear, anxiety, worry and depression. Often the need for pain medications was lessened, because the patient was able to tolerate pain more easily. There was a profound increase in serenity, peace, and calmness, with a marked decrease in the fear of death.

Roland Griffiths, Ph.D., is a Professor in the Departments of Psychiatry and Neurosciences at the Johns Hopkins University School of Medicine. He is the principal investigator of the Johns Hopkins Psilocybin Project. He and his team have been studying the effects of psilocybin and its ability to bring about mystical experiences. Their team conducted the largest and most rigorous study in this new wave of psychedelic research involving fifty-one patients who had received a potentially life-threatening cancer diagnosis.

“We found that the response was dose-specific,” Dr. Griffiths said. “The larger dose created a much larger response than the lower dose. We also found that the occurrence of mystical-type experiences is positively correlated with positive outcomes. Those who underwent them were more likely to have enduring, large-magnitude changes in depression and anxiety.”

The Johns Hopkins group reported that psilocybin decreased both clinician and patient-rated depressed mood, anxiety, and death anxiety. The results showed increased quality of life, sense of connectedness, and optimism. Participants expressed an increased belief that death is not an ending, but rather a transition to something even greater than this life. About 70% reported the experience as one of their top five spiritually significant lifetime events, including the birth of a child or death of a loved one.”

He continued, “There are potential risks associated with these compounds. We can protect against a lot of those risks through the screening and preparation procedure in our medical setting. About 30 percent of our people reported some fear or discomfort arising sometime during the experience. If individuals are anxious, then we might say a few words, or hold their hand. It is really just grounding them in consensual reality, reminding them that they have taken psilocybin, that everything is going to be alright. Very often these short-lived experiences of psychological challenge can be cathartic and serve as doorways into personal meaning and transcendence.”

Dr Charles Grob, the principal investigator on the UCLA study reported similar results, “Psilocybin facilitates a greater likelihood of achieving a psycho-spiritual state of consciousness — a mystical kind of experience. The old research literature from the 50’s and 60’s very strongly indicated that individuals in psychedelic research studies, who experienced a spiritual epiphany during the course of their many hour treatment sessions, were more likely to have a long-term positive therapeutic outcome.”

Why does psilocybin appear to efficacious, while modern pharmaceutical efforts are largely ineffective?

Dr. Griffiths explains, “Psilocybin acts very selectively at serotonin-2A receptors, which are a neurotransmitter that promotes positive feelings. Acting like a ‘lock and key’, so psilocybin can click in to this receptor site and activate a variety of processes.” With all of the classical psychedelics; LSD, psilocybin, mescaline; the thing that they have in common is that they activate serotonin-2A receptors.

Dr. Danforth added, “Sometimes when we are in a challenging situation in life, our thoughts can get stuck in a loop. Negative thoughts just continue and continue and continue and psilocybin in a therapeutic setting can function like a big hand coming in and jiggling the needle on a skipping record, so that a tune can resume.”

Yet another study — this one conducted by NYU Langone Psilocybin Research Project — examined the effects of psilocybin on the psychosocial distress with patients with advanced cancer. This trial was led by Stephen Ross, M.D. and Anthony Bossis, Ph.D. Their study included 29 patients facing end-of-life. In their sessions, subjects were either given either a moderate dose of psilocybin or a placebo (niacin), cross-switching to the other after about seven weeks after the first session. Findings were very similar to the studies at UCLA and Johns Hopkins. They found that psilocybin produced immediate, substantial, and sustained improvements in anxiety and depression leading to decreases in cancer-related demoralization and hopelessness, improved spiritual well being, and an increased quality of life. At the six-month follow-up, psilocybin was associated with enduring anxiolytic and antidepressant effects.

The NYU researchers further reported sustained benefits in existential distress and quality of life, as well as improved attitudes towards death.

There is growing anticipation that psilocybin could be rescheduled and open up further opportunities for psychedelic research. Decriminalization of psilocybin is going to the voters in the city of Denver on May 7.

“I look forward to a day, that if it were clinically indicated to be able to offer that service to certain clients,” Dr. Danforth said. “Expanded access is not available yet; no one in the United States is able to legally work with Schedule I substances in a clinical setting,”

She continued, “It’s possible in the near future that some in the MDMA (ecstasy) world we will have expanded access for PTSD therapy. It’s hard to anticipate what’s going to happen with MDMA and psilocybin, but I don’t think it’s going to happen overnight. Everybody’s kind of waiting to see what happens in Denver and what that’ll mean… There are a ton of opportunists rushing in trying to make a buck, but in terms of real clinical work, that process moves at a snail’s pace, as it should.”

I asked Dr. Danforth on additional prospects for psychedelic-assisted psychotherapy. “My private practice is almost exclusively adults on the autism spectrum and some of them have very severe social anxiety and MDMA would be a real powerful clinical tool.”

She continued, “Others are very interested at looking at psychedelics for the betterment of well people. Two streams of effort working here — treating people that are unwell or providing guidance for those that are well, like we have been doing for thousands of years. They may have spiritual reasons for altering consciousness. It’s not all about getting a competitive edge in Silicon Valley, but it’s about how do we make our community healthy. For me it just happens to be the healing aspect. For people that are really suffering is where my interests lie.”

So what are the most promising areas in psilocybin research?

“Two of the most promising areas are Palliative Care; reducing the stress near the end of life and addiction studies,” Danforth replied. “I’ve always been really fascinated with the smoking cessation studies at John Hopkins and with Michael Bogenschutz M.D. (NYU) studies on alcoholism. I think that was one of the most promising areas of study from the first wave of psychedelic research in the sixties. I’d like to see more funding and research around treating addiction.”

Danforth said it’s frustrating not being able to use all the tools she’d like when treating patients. “I feel a bit like a firefighter who’s still allowed to fight fires, but I just can’t bring my hose,” she said. “The answer isn’t, ‘well let’s just give everybody fire hoses,’ because a lot of people could be hurt in an uncontrolled setting. I hope that we can find a middle ground.”

Dr. Danforth advises, “Psilocybin was used as a sacrament for sacred rituals, with a lot of reverence, wisdom, tradition, and mentoring. I’m not sure we are grown up enough as a culture to just have widespread access.”

Dr Danforth’s associate on the UCLA study, Gurpreet S. Chopra, emphasized, “I think it’s kind of ridiculous to be a scientist and a doctor and not investigate and try to understand how we can use these tools in a Western Culture safely.”

I posed a similar thought to local clinical psychologist and founder of the Alaska Psilocybin Society, Dr. William Kerst. Dr. Kerst finds that psilocybin being a Schedule I substance to be ridiculous. “It clearly has potential medical benefit as demonstrated by the studies that are ongoing and not only is it not necessarily addictive, but it tends to be anti-addictive.”

“Working with the Alaska Psychedelic Society, I have had several patients that are struggling with end-of-life anxiety, which is one of the primary uses of psilocybin in some of these studies and they don’t have time for legalization efforts to get pushed through. They need relief and it looks like these substances may be able to do that, and right now we have to say, ‘no’ to these patients and that’s terrible. It’s heart-wrenching, honestly.”

Should you have further interest in investigating psychedelic substances, the Alaska Psychedelic Society is holding their monthly meeting on Saturday, April 27 from 2 to 4 pm at Uncle Leroy’s Coffee, located at 701 West 36th Avenue in Anchorage. Also visit the Society’s Facebook page to keep updated on future meetings as well as recent studies and articles regarding psychedelics.

Complete Article HERE!

You’re going to die someday.

WeCroak’s Hansa Bergwall says remembering that will make your life better.

Hansa Bergwall, the co-founder of WeCroak, a mindfulness app that reminds you five times a day that you’re going to die.

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“If they were going to write your obituary tomorrow, would you be happy with what they said? That’s an important question.”

On the latest episode of Recode Decode with Kara Swisher, WeCroak co-founder Hansa Bergwall joined Kara in studio to talk about his app, which reminds you about death five times a day.

“One of the things that makes us most unhappy is we tend to get caught up in things that don’t matter,” Bergwall said. “We tend to get caught up in an angry voice or in minutiae or in stress or in tons of things that ultimately aren’t that important to us. And when we remember our mortality, we can take a deep breath and just go, ‘Oh, I don’t have to think about this. I don’t have to engage. I don’t have time for this.’ And move on.”

The app, which uses a picture of a poison dart frog as its logo, is based on a Bhutanese folk saying: “To be a truly happy person, one must contemplate death five times daily.” It pushes quotes about death, loss, and acceptance to users at five randomly selected times every day, between 7:00 am and 10:00 pm.

Bergwall said he and his cofounder, Ian Thomas, are proud that their 30,000 monthly users spend less than two minutes in the app daily. They designed WeCroak to have no advertising or hooks to social media, lest they cheapen the experience or compromise their own values.

“We know what social media is: It’s addictive,” he said. “It’s not really a safe place. If you feel safe there, great, take it there. But we’re not gonna make a button encouraging you to do that. Because we take the responsibility of reminding people of their mortality, which is a vulnerable thing, seriously.”

On the new podcast, he also talked about the “deluded” ways Silicon Valley is trying to hack death and why tech moguls who encourage employees to meditate may be tricking them into working longer hours.

Complete Article HERE!

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.

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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.

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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.

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