‘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!

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

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!

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.

Complete Article HERE!

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

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

By Rachel Ashcroft

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

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

Review: The Art of Dying Well – A Practical Guide to a Good End of Life

Author photo Katy Butler and book cover

By Trish Rodriguez*

I have to confess that I am a Katy Butler fan. When I started the journey to become an End of Life Doula, her Knocking on Heaven’s Door was one of the first books that I read. I didn’t so much read the book as devoured it, often catching a sob in my throat as I read her deeply personal account of the horror show that became her fathers final years. I admired the courage and honesty of the parts of the book that were memoir, and the research on the current culture of American healthcare with respect to death. I agreed that our way of dying in the good ol’ USA has come to leave something to be desired.

In her newest work The Art of Dying Well – A Practical Guide to a Good End of Life, Katy picks up the narrative in a new and accessible way. She divides the process of moving toward the end into seven unique segments defined not so much by age but by ability and functionality. At the beginning of each of these chapters she has a list of statements and suggests that if many of these apply to you now, this might be where you find yourself. I found this approach fresh and, best of all, non-threatening. This might be just the way to start a conversation with a unwilling family member.

In the first segment, aptly titled Resilience, we learn that in this stage of well being we can still dramatically impact our health, longevity, and ultimately the quality of our death. By building reserves (aka altering what we eat and whether we’re active enough), finding allies in preventative medicine, and increasing our circle of friends and acquaintances, we are still in the drivers seat with regard to how things will go for us as our situation changes. This perspective gives lots of practical advice for those who may think there is plenty of time.

With each ongoing chapter comes an inevitable decline – not according to any decade of life or disease process – but according to naturally decreasing functionality. I like that she is careful to follow this definition, as people age as they darn well please, and I personally know 90 year olds who are still more capable than I am. This lets you find your home page, so to speak, without feeling like a failure or self fulfilling a prophecy to act your age. Every chapter offers practical advice; about healthcare, money, housing, and all those pesky details like advanced directives and wills. In nearly every chapter there are personal accounts of folks who managed things well, or not so well, and lots of food for thought.

There was a great deal of material that wasn’t new to me, but I work with dying  people. In my every day life, I am always shocked at how hard working, responsible people don’t bother with a will or advanced directive… because? They aren’t going to die? Or they’re not going to die tomorrow? This book may be just the ticket to get you going, or to give to that parent who is dragging their feet about preparing for anything. With a helpful glossary and pages and pages of useful references included, this will certainly be a ‘go to’ book in my personal library and in my practice.

* Special correspondent, Trish Rodriguez,  is an End of Life Doula and hospice vigil volunteer in Anacortes, WA.

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.

Complete Article HERE!