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‘It could be any day now’…

Why how you die matters

In a survey at the start of this year, more than 8 in 10 U.K. adults said the role of hospices would become more important in the next decade.

By Dominic Rech

It’s approaching 1 a.m. in Bilborough, a suburb of the British city of Nottingham. Peter Naylor, 70, is slumped in his bed, only yards from the front door of his small bungalow.

He can’t walk, so we unlatch the door and reach him immediately. The low buzz of an oxygen concentrator greets us.

Tubes run around Naylor’s ears and across his face and curl up into his nostrils. Framed family photos are nestled on a shelf by his side, each capturing intimate moments from his life.

We too are experiencing an intimate moment with him — but for an entirely different reason.

He’s dying.

A Nottinghamshire hospice team that cares for the terminally ill is three hours into a night shift. Naylor is the third patient they are visiting.

He’s been struggling with diabetes and has had multiple heart attacks. His breathing is heavy and pronounced. He exhales before opening his mouth slowly to say, “I’m stuck on this bed. I have been for more than one year. I can’t get off. I can’t go to the toilet. I can’t do anything. I just lie here.

“I’m near the end of my life. It could be any day now.”

Outside access to hospice night services, like this one, is unusual given that patients are at a very vulnerable stage of life.

But the hospice team granted CNN access because they want to show how palliative care is provided in the UK and make us think more about the kind of death we want for ourselves and our loved ones. The topic is close to my heart because the team looked after my father before he died this year.

“We all think we are immortal, so we want to put more money into saving lives; no money is being put into palliative care because we don’t accept we are going to die,” said Tracey Bleakley, the chief executive of Hospice UK, the umbrella organization for hospices.

‘It means everything’

Hospices offer specialist care and support to people with terminal and life-limiting illnesses. They coordinate with the UK’s National Health Service to provide care for people who are often in the end stages of life, commonly those who no longer want to be in the hospital and want to receive care at home.

It costs £1.4 billion ($1.8 billion) a year to run hospices, according to the charity Hospice UK. They are funded partially by the National Health Service but rely heavily on fundraising and donations.

During our time with the overnight hospice team, we met multiple people receiving end-of-life care. Given the sensitivity of their personal circumstances, some patients didn’t want to be interviewed or photographed.

Naylor was willing to speak to us. After leaving a care home, the 70-year-old opted to receive end-of-life treatment in the comfort of his own bungalow.

But his condition progressively worsened. On one occasion, he fell while trying to go to the toilet. He was alone and unable to move. It was three hours before anyone came to help him.

As a result, the care he receives has been ramped up, and he not only gets visits from the overnight hospice team but now has a full-time carer who lives with him during the day. The extra support allows him to relax and sleep better.

“It means everything,” he said. “It’s the nighttime when I get frightened, when I am here on my own. But I roughly know when they are coming and can call them if I really need them.”

The modern hospice movement took off in the UK in the 1960s, says Allan Kellehear, a professor specializing in end-of-life care at the University of Bradford. It spread to the United States in the 1970s.

Life expectancy was increasing, and the way people were dying was fundamentally changing, he said. More people were dying of long-term, chronic illnesses such as cardiovascular diseases and cancer rather than infectious diseases.

Hospices took up the mantle of caring for people with these long-term terminal illnesses. Now, there are more than 200 hospices in the UK. The number of hospice programs in the United States has been on the rise since the first program started there in 1974; there were 5,800 as of 2013.

However, in many low-income and middle-income countries, end-of-life care is poor, according to The Lancet Global Health journal. Tens of millions of people in need of palliative care have severely limited access, even to oral morphine for pain relief.

Naylor is adamant that he wants to die in his own home — something that happens to less than a quarter of people in England, according to the UK’s Office for National Statistics.

He’s not alone. Before meeting him on the overnight hospice shift, we visit the home of Harry and Serena Perkins in Nuthall, Nottingham, just before midnight.

It becomes obvious that this visit is a routine one for both the hospice team and the patient.

We are welcomed by Harry’s warm gaze in the hallway. The 96-year-old was an engineer during World War II. After quickly greeting us, he shuffles off into the lounge with his wife.

He has been married to Serena since 1973. They met when Harry was checked into a hospital with pneumonia; Serena was his receiving nurse.

“I would have said this is the finest girl I could have ever married,” he says, perched on the sofa next to her.

Harry, who has bowel cancer and heart problems, uses the day support provided by the hospice once a week, when he sees friends and accesses day therapy. He is also visited by the night support team about 11:30 p.m. every night.

“I thought it was a nuclear bomb that was going to take me, but that’s finished. So it will be my heart or the cancer that takes me.”

Despite his health, Harry seems more concerned about Serena’s well-being than he is about his own.

“We look forward to them coming every night. They are lovely people. They take me upstairs to bed, get me changed,” he says. “But they also talk to my wife. Keep her company, which is very important.”

Serena too is grateful. “I didn’t realize what a weight I had only my shoulders until they came. It’s really given me my freedom back in a way,” she says.

The care helps enable Harry to continue living with Serena in their home. It allows him to enjoy the quality of life he wants.

As we get ready to leave, Harry stands to get ready for bed. He shakes my hand firmly and mumbles a proverb from former British Prime Minister Winston Churchill: “Never give up. Never, never, never.”

Who’s providing the care?

The Nottingham hospice CNN spent time with is a charity.

Although a third of its income comes from the UK’s National Health Service, the rest comes from fundraising; the hospice has to raise an average of £7,000 (about $9,000) a day in order to operate the services it provides, according to Jo Polkey, head of care at Nottinghamshire Hospice. Many hospices across the country face a similar funding shortfall.

“Somebody that requires palliative nursing care is when there is no treatment options left. Trying to make someone as comfortable as possible. We want to add to their lives rather than think of it as the ending,” she says.

Its main service is Hospice at Home, through which more than 60 nurses and health care care assistants provide care at home to people with terminal and life-limiting illnesses. They also provide the overnight support teams, a day therapy unit, and a bereavement care and support service.

“We are often dealing with people very much at the end of life and in the last few days, weeks and hours of life,” Polkey said. “I think our average length of stay [of a patient] is about 26 days. They don’t stay in the services very long before they die.”

What does it take to be a member of a hospice team? One of the first things she says is that they are very “resilient.”

The night shift is arguably where this is most palpable.

‘People die on your shift’

Two overnight carers, Deborah Royston and Sonia Lees, describe the highs and lows of their jobs in between visits to patients.

Aside from the late hours, the job requires a lot of driving, with many of the patients living across Nottinghamshire, a county near central England that is home to just over 800,000 people. The shift usually usually starts at 10 p.m. and finishes before 7 a.m.

Royston says she finds it particularly difficult when she develops close relationships with patients.

“It’s really sad … to deal with death on a daily basis. Sometimes, people die on your shift, but it’s good you can be there for both them and the family members in that time of grief.”

Another visit we made was to the Wollaton home of Linda Wagner, whose husband, Bob, relies on overnight hospice support. He has progressive supranuclear palsy, a rare condition that can cause problems with balance, movement, vision, speech and swallowing.

“I know some people don’t believe in angels. Well, I do, but that is how I would class [overnight carers] — as angels,” she said. “I didn’t know the support was out there before. If I’m struggling, I know there are other people out there going through the same thing. It’s just a wonderful thing.”

Despite difficulties that come with Royston’s field, she described the job as her “passion.” She’s been helping provide night support for 12 years and finds the opportunity to build relationships with patients and their families fulfilling, even though it can be heart-wrenching.

“I just love it. It makes my heart feel good. I get quite emotional about it because you meet some nice, wonderful people.”

A looming crisis in palliative care?

A pun doesn’t always seem fitting when talking about death, but Polkey’s use of one seems to strike a chord: “People are dying to come to our services,” she says.

Over the past three years, hospices have helped more than 200,000 people across the country annually, Hospice UK’s Bleakley says. However, research by her organization in 2017 found that 118,000 people each year could benefit from hospice and palliative care don’t receive it because they live in an economically deprived area, live alone or have a certain type of terminal condition, among other reasons.

Bleakley thinks there is a crisis in palliative care that is only going to get worse.

“We had a massive baby boom after the war, and now those people are starting to die, so we are already going to have an increase in the death rate. We are all living longer, and we are all ill for longer at the end of life.”

The UK’s aging population is only going to increase the pressure, Bleakley says. In 2017, 12 million UK residents were 65 and older: approximately 18.2% of the population, according to the Office for National Statistics.

In a survey at the start of this year, more than 8 in 10 UK adults said the role of hospices would become more important in the next decade.

Bleakley was also worried about what the UK’s planned exit from the European Union might bring.

“Anything that affects consumer confidence, from companies having extra money for supporting hospices financially to people choosing to run a marathon to raise money — numerous things are affected by Brexit,” she said.

“And on the work force side, we will see more members sucked out” of the National Health Service.

Inclusivity challenges

Another challenge for practitioners is inclusivity.

Kellehear, of the University of Bradford, says that not many ethnic minority groups in the UK are accessing palliative care.

Nottinghamshire Hospice’s Polkey noted, “we look after a lot of white middle-class people. However, we are sat in one of the most diverse cities in the country. … We desperately want to reach into communities. Diversity is something we are working on.”

Hospice UK is running a campaign called Open Up Hospice Care to try to address this issue.

“There are people in the LGBT community … minority groups, people in prison — a lot of these people feel that a lot of the traditional services don’t work for them,” Hospice UK’s Bleakley said.

She also says that funding is going to be a fundamental issue for hospices.

The National Health Service’s Long Term Plan, earmarking the UK’s key health plans and priorities for the next 10 years, includes a bigger focus on community care and training people in palliative care, but Bleakley says there is no indication that any more funding would be put into palliative care.

“It costs 1.4 billion (pounds) a year to run hospices, and the NHS is putting 350 million in; they are not putting in the true cost of care or anything like it.” she said.

However, she doesn’t just hold the government responsible. She says society as a whole has to be more engaged when it comes to end-of-life care.

Kellehear agrees. He promotes the idea of compassionate communities and cities, a more holistic approach to palliative care that includes the bereaved as well as those who die.

It is based on the idea that care shouldn’t fall simply to doctors, nurses and the surrounding families of dying people. Instead, the wider community should step in to support people with terminal illnesses.

“We shouldn’t wait for disaster to happen. It’s about going into the schools, going into the workplaces, and saying ‘look, this is everybody’s business. What are you doing to do your bit?’ There’s not enough of that going on in the UK.”

For example, he says, schools should prepare kids for what to do should a fellow student lose a loved one.

“The people we keep forgetting in palliative care is the bereaved, who often suffer from similar social consequences as people with life-limiting illnesses: depression, anxiety, loneliness, social rejection and even suicide,” he added.

“These people are best helped when communities come together to support the people who are at risk of these things.”

Bleakley thinks we need to face up to the reality of death more often.

“A good death is a legacy for the people we leave behind.”

Complete Article ↪HERE↩!

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Psychologist Claire White on why we cling to the rituals of death

Even if people have no religious belief in the afterlife, they can’t cognitively imagine themselves as ceasing to exist.

“When you’re gone, you’re gone – just put me in the compost bin.”

California State University psychologist Claire White has heard it before – but doesn’t believe it. On the phone to the Listener, ahead of her trip to New Zealand as one of the guest speakers at the University of Otago’s Science and the Afterlife forum, she says even if people have no religious belief in the afterlife, they can’t cognitively imagine themselves as ceasing to exist.

“It is a universal way of thinking that transcends religious or ethnic belief – that their lives have meaning and purpose that continue after their death. Logically, atheists shouldn’t really care if you dump them in the trash can – but they do. There is a disconnect between the higher-level cognitive belief that there is no god and this kind of cognitive default – that there is something about me that makes me who I am that continues after I die.” This is what is called “psychological essentialism”.

“Even if we believe the soul transcends to heaven, we still go to a grave site because we really believe there is some essence of a person that continues after their death. One of the reasons tree burials and cremations have become popular is because the essence of the person is reflected in that tree or [where the ashes are scattered] along that sea.” Funerary rites acknowledge that legacy and help with the grieving process.

In reviewing funerary practices around the world, White’s team found 97% of the samples studied engage with the bodies of the dead. They touch them, wash them, dress them; they talk, they cry, they say goodbye.

“Which is all psychologically healthy. In the Western world, we are outliers. We are moving from a traditional model to this modern professionalisation of mortuary practices where you pay someone to come and prepare the deceased. There is little contact with the deceased, there is not a lot of emotion – it is done and dusted very quickly. It doesn’t really help the grief experience.”

Nor does it help us prepare our children for death, plan our own funerals or address pressing issues such as diminishing cemetery space.

“People don’t want to think about death – the death of themselves, the death of others. This is one of the main obstacles to top-down change from governments. We don’t plan, we don’t make living wills, children in the US are not educated about death – but how do we explain death to children when we don’t talk about it among ourselves?”

Complete Article ↪HERE↩!

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‘It’s confusing as hell’…

91-year-old was told he was dying, said his goodbyes — and then learned he’ll live

Phil Robinson finds comfort in the chance to watch the squirrels and birds at his home, after being mistakenly told he had only weeks to live last month.

By Erin Brohman

When Phil Robinson, 91, was told cancer had spread through his lungs and he had mere weeks left to live, he said his goodbyes, got his affairs in order and was prepared to die — until doctors told him he was, in fact, cancer-free and could return home.

“I don’t know where I’m going from here. I really don’t know how to handle this at all,” said Robinson.

“I don’t think most people get this chance at all. Never.”

Robinson went to Winnipeg’s St. Boniface Hospital on March 20 because he was having trouble breathing. After several tests, he was diagnosed with pneumonia and admitted to a ward, where he started treatment.

A doctor visited him the next morning with grave news: results of a scan appeared to show the spread of cancer throughout his chest. Cancer in his neck that he’d had radiation treatment for nine years earlier, it seemed, had spread.

“He said, ‘Phil, you’ve got two to three weeks to live.'” 

My doctor came round and he said, ‘Oh, Phil. I have one small problem. We made a mistake.’

– Phil Robinson

Robinson, a widower of about 10 years, had his son, 60, with him at the time. Robinson didn’t want to alarm him.

“I said, ‘Well, we’ve got to do something about it.'”

Over the following two weeks, all of Robinson’s friends and family came to his bedside to pay their respects and say goodbye. The hospital chaplain visited him. It took some time for him to get there, but Robinson eventually asked to speak to the medical assistance in dying, or MAID, team.

“I had a wish, because pushing sort of 92 years old, you don’t really mind. You’re due to go if you’re ready to go,” he said. “I wanted to finish it right now and get it out of the way.”

‘We made a mistake’

But a definitive diagnosis of cancer was required before he could be offered medically assisted death, so he went for another CT scan. A different doctor delivered the results.

“He said, ‘Oh, Phil. I have one small problem. We made a mistake. You do not have cancer through your body,'” Robinson said. 

“‘You don’t have this anymore, and you never had.'”

“Oh!” he laughed nervously, recalling the moment.

“So all of a sudden I find that my cancer is still exactly where it was around my neck, it’s never moved to anywhere else, and it did leave you in a complete sort of — you don’t know where the hell you go.”

According to the hospital discharge summary, the second CT scan showed his lungs and lymphatic areas had cleared. The signs of the infection — which was originally believed to be cancer — had cleared on the second scan.

His son took him back home on April 8.

“[Robinson had] been seen by the palliative team but now discharged as it appears he has no cancer,” reads his discharge summary.

CBC contacted the Winnipeg Regional Health Authority to ask why additional tests after the first CT scan appear not to have been done before Robinson was told he had only weeks left to live.

A spokesperson for the WRHA said it cannot comment on Robinson’s situation for privacy reasons, and that no critical incident report has been filed.

Robinson has been in touch with CancerCare’s patient relations department to get answers. He hopes someone can offer him some guidance.

‘They’re thrilled that I’m back’

“I am not dying. Nope. I’m here for the long run. I don’t know how long that’s going to be, but I’m here,” Robinson said with a chuckle, then gestured out his window. He’s discovered a newfound easy connection with the backyard wildlife.

“Look at my squirrel — he’s sitting out there on the little thing. You can’t see him, but he’s sitting there, watching us.”

Once home, Phil began sharing the news that he was in fact still around with his friends and family, as well as home-care workers and even the two ladies who clip his nails every two weeks, who visited him in hospital to say goodbye.

“I had hugs like you wouldn’t believe,” he said with a laugh. “They all have the same response. They’re thrilled that I’m back.”

But for Robinson, it’s a bit more complicated, especially when he’s alone with his thoughts. He already faced the difficult task of saying goodbye to everyone he loves: 24 family members and 12 of his ‘secondary family’ of supportive friends, until he couldn’t bear the sadness of repeat visits.

He reflects on his own vitality. At 16, Robinson was a member of the U.K.’s Royal Navy during the Second World War, bringing supplies and refreshments to troops. He travelled from his home in Norwich, England after the war to join the Canadian Army, serving in the Korean War, before joining British Airways as a traffic assistant, and later a pilot for the military.

In his lifetime, he’s lost two wives, two siblings and two of three children to cancer.

“I accept the fact that I’m not dead. But now I’m just scared that I’m going to get sick or something, and everybody will say, ‘He’s dead again. And we’ve already done this.’ It’s confusing as hell.”

Robinson sits on his back patio every afternoon where things are certain: the chirp of birds at the feeder, the sociable squirrels, a rabbit who drops by each day.

“How many people do you know who died and came back? And particularly it was Easter,” he laughed, with a tear in his eye.

Complete Article ↪HERE↩!

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How to Properly Prepare for End of Life Care

Sometimes death comes like a thief in the night. Other times, there’s a slow and clear buildup. In the latter scenario, one of the benefits – if you can even call it that – is that you have time to prepare for the end of your life.

By Larry Alton

Preparing for Your Final Chapter

At some point, it may become clear that whatever healthcare, treatments, medication, or procedures you’re pursuing to prolong your life are no longer effective. You may also come to realize that they’re doing more harm than good – robbing you of the opportunity to enjoy what time is left. When these revelations become clear, the best thing you can do is stop and focus on your quality of life.

As sobering as it is to accept, you will eventually pass on. And either you pass on without any purpose or plan – leaving the burden to your loved ones – or you can take the time to prepare for the end of your life and, in the process, provide a greater sense of closure for everyone involved.

Everyone’s end of life care situation will be different, but here are some suggestions to help you approach this sensitive and emotional time with poise:

1. Have Important Conversations

The first step is to have the right conversations with the right people. When you decide to stop seeking treatment or pursuing certain healthcare options that are designed to extend your life, it’s important that people know.

Your family needs to know that you’re dying – not so that they can feel sorry for you, but so that they may process it in a healthy manner. These conversations are more for your loved ones than they are for you. Set aside some time to speak with parents, siblings, grandchildren, close friends, mentors, etc. You don’t have to be overly sentimental or wise – just be yourself. Honesty will go a long way.

2. Make Your Wishes Known

Now’s the time to make your wishes known. If you’re currently in a nursing home, hospital, or another care facility, it may be wise to move back home. This will lessen your chances of receiving poor care from a staff that may neglect certain important needs. Instead, you can receive personalized care from your loved ones (who are more likely to respect your wishes).

If you haven’t already done so, now’s also a good time to designate a trusted loved one to make medical decisions on your behalf.

“This person, called your healthcare proxy or medical power-of-attorney, is the person who you know will make decisions the way you want them made and who can most easily stand at your bedside, if necessary,” patient advocate Trisha Torrey writes. “Your proxy will need to make decisions for you if you are in a coma, have a sudden heart attack or stroke, experience another debilitating event, and can’t speak. In addition to your primary representative, you’ll want to designate who your second choice representative should be.”

If there are specific details that are important to you, make these clear as well. For example, some people only want certain individuals present when the time comes for them to die. Other people don’t care. Speak your mind now so that you have the chance to die on your terms.

3. Get Financial Matters in Order

Hopefully you already have a last will and testament drafted. If you don’t, go ahead and do so. This will allow you to direct your finances and assets to the right people. It also saves your heirs from having to deal with the legal fallout of an estate that hasn’t been properly accounted for.

4. Secure the Right Burial Arrangements

Finally, be sure that you establish and document your burial arrangements prior to your passing. This is one less thing your family has to worry about. It gives them the opportunity to grieve properly, rather than hurrying around to figure out administrative details.

Leaving With Grace and Dignity

You will leave a legacy when you die. Whether this legacy is positive or negative remains to be seen. By preparing for the end of your life with purpose and dignity, you’ll increase the chances of passing on a legacy that people are happy to attach themselves to. Take some time to think about your wishes and how they can be executed tastefully.

Complete Article ↪HERE↩!

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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.

By

“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.

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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.

By Darren Smith

“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.

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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.

By Eric Johnson

“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.

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