How to have a great conversation with someone who is going to die

By Pieter Hintjens

Software developer Pieter Hintjens outlines his rules for talking to someone who is dying, as he faces up to his own diagnosis of terminal cancer

001

Software developer Pieter Hintjens has been diagnosed with terminal cancer at the age of 53. He will be opting to end his own suffering through euthanasia, which has been legal in Belgium since 2002. He has three children, aged twelve, nine and five. In a final article on his website, he has outlined a protocol for dying, including these thoughts on how to have a conversation with someone you know is going to die.

It can be horribly awkward to talk to a dying person (let’s say “Bob”). Here are the main things the other person (let’s say “Alice”) should not say to Bob:

  • “Hang in there! You must have hope, you must fight!” It’s safe to assume that Bob is fighting as hard as possible. And if not, that’s entirely Bob’s choice.
  • “This is so tragic, I’m so sad, please don’t die!” Which my daughter said to me one time. I explained softly that you cannot argue with facts. Death is not an opinion. Being angry or sad at facts is a waste of time.
  • “You can beat this! You never know!” Which is Alice expressing her hope. False hope is not a medicine. A good chemotherapy drug, or a relaxing painkiller, that’smedicine.
  • “There’s this alternative cure people are talking about,” Which gets the ban hammer from me, and happily I only got a few of those. Even if there was a miracle cure, the cost and stress (to others) of seeking it is such a selfish and disproportionate act. With, as we know, lottery-style chances of success. We live, we die.
  • “Read this chapter in the Bible, it’ll help you.” Which is both rude and offensive, as well as being clumsy and arrogant. If Bob wants religious advice he’ll speak to his priest. And if not, just do not go there. It’s another ban hammer offence.
  • Engage in slow questioning. This is passive-predatory, asking Bob to respond over and over to small, silly things like “did I wake you?” Bob is unlikely to be a mood for idle chitchat. He either wants people close to him, physically, or interesting stuff.

Above all, do not call and then cry on the phone. If you feel weepy, cut the phone, wait ten minutes, then call back. Tears are fine, yet for Bob, the threat of self-pity looms darker than anything. I’ve learned to master my emotions yet most Bobs will be vulnerable.

  • Stories of old adventures they had together. Remember that time? Oh boy, yes I do… it was awesome!
  • Clinical details. Bob, stuck in his bed, is probably obsessed by the rituals of care, the staff, the medicines, and above all, his disease. I’ll come to Bob’s duty to share, in a second.
  • Helping Bob with technical details. Sorting out a life is complex and needs many hands and minds.
  • “I bought your book,” assuming Bob is an author like me. It may be flattery, or sincere, either way it’ll make Bob smile.

Above all, express no emotions except happiness, and don’t give Bob new things to deal with.

It’s not all Alice’s work. Bob too has obligations under this protocol. They are, at least:

  • Be happy. This may sound trite yet it’s essential. If you are going to be gloomy and depressed, Alice will be miserable every time she talks to you.
  • Obviously, put your affairs in order. I’ve been expecting death for years now, so had been making myself disposable wherever I could. For family, that is not possible. For work, yes.
  • Remove all stress and cost that you can. For example Belgium permits euthanasia. I’ve already asked my doctors to prepare for that. (Not yet!, when it’s time…) I’ve asked people to come say goodbye before I die, not after. No funeral. I’ll give my remains to the university here, if they want them.
  • Be realistic. Hope is not medicine, as I explained. If you are going to negotiate with your doctors, let it be pragmatic and in everyone’s interests. I’ve told mine they can try whatever experimental chemotherapy they wish to. It’s data for them, and the least I can do for a system that’s given me five+ years of extra life.
  • Assume the brutal worst. When my oncologist saw my scan she immediately called me and told me, in her opinion, it was cancer. In both lungs, all over the place. I put the phone down, and told the children. The next day I told their schools to expect the worst, then my lawyer, then my notary. Ten days later the biopsies confirmed it. That gave us ten more days of grieving and time to prepare.
  • Be honest and transparent with others. It takes time to grieve and it is far easier to process Bob’s death when you can talk about it with Bob.

There is no shame in dying, it is not a failure.

Complete Article HERE!

A woman’s world?: Palliative care from a gendered perspective

By Palliverse

Roy Lichtenstein. Nurse
Do we understand culture’s effect on care roles?

Dying at home is widely celebrated as the pinnacle of a ‘good death’. It is therefore unsurprising that governments internationally are framing current moves to increase the numbers of people dying at home as a ‘win-win’ situation. People get what they want at the end of their lives and the health system saves money. Result! However, is it really that straightforward? Increasingly, our research group has been thinking about the unpaid workforce we rely on to enact home dying. Who are they? How does this caring work impact upon them physically, psychologically, socially and financially? Why are they so invisible?

It was these questions that drew us into thinking about the gendered nature of palliative care. For this workforce is overwhelmingly made up of women, predominantly older women, whose contribution is overlooked, we would argue, largely because such caring tasks are regarded societally as women’s work; as a normal and natural part of women’s lives in line with their caring, kind, and maternal nature.

When we looked into what little has actually been published on this topic, we found that women who were providing care to a family member at end of life were suffering from a vast array of physical and mental health problems directly resulting from their caring roles. We found that women continue to shoulder more of the caring burden themselves without asking for formal assistance, even when they themselves were in poor health. What’s more, because societies across the Western world are ageing rapidly, and women consistently outlive men, this situation is only going to get worse.

It’s also important to look at what kinds of care women are providing. Women are more likely to provide intensive personal care, and are twice as likely to provide toiletry assistance as men. Conversely, men are more likely to treat caring as a job and welcome extra support in all aspects of care.

Overwhelmingly, this disparity both in the number of women caring than men, and in the differing nature of this care, results from women’s adherence to gendered expectations, from both their families and society in general, that this is something they must do.

It may seem like we’ve painted a fairly gloomy picture, but what is far more concerning is that the picture remains incomplete. Research into palliative care from a gendered perspective is sorely needed if we are ever going to formulate effective strategies to mitigate the impacts – both mental and physical – that women disproportionately experience when providing palliative care.

Its importance is greater still if we ever want to fully understand palliative care as a whole for it is overwhelming a women’s world; as much in the ‘informal’ home-setting as it is the ‘formal’ hospital, hospice and aged residential care sector. Women comprise the majority of palliative care professionals, carers and patients and it is about time we start considering how ideas of gender – the expectations shaping ideas of femininity and masculinity – pervade all aspects of end of life care.

Tessa Morgan, Merryn Gott and Lisa Williams

Te Arai Palliative Care Group, School of Nursing, University of Auckland

For a link to our recently published article on gender and family care-giving at end of life go to: http://www.ncbi.nlm.nih.gov/pubmed/26814213  or  https://www.researchgate.net/publication/292072132_Gender_and_family_caregiving_at_the_end-of-life_in_the_context_of_old_age_A_systematic_review

Ed:  We thank the authors for sharing this timely and important work.  We are also excited to announce that we will be working with the authors on a series of blogs exploring gender issues and palliative care.  

 Complete Article HERE!

“Hospitals are not a good place to die”

End-of-life doula Anna Lyons on why we need to rethink our attitudes to death

By

holding hands

I’ve been with the dying many times, both in a personal capacity and as a health care professional. As an end-of-life doula my work is centred around supporting people and their families at end of life. My experiences have led me to agree wholeheartedly with the BMA in its recent report: hospitals are not the best place to die.

An overwhelming majority of us want to die at home, yet statistics show the reality is that 54% of us will die in hospital. But in my opinion, hospices are for the dying. Home is for the dying. Hospitals are not. The raison d’etre of end of life care is to help people experience a ‘good death’. We will remember how someone we love dies forever. The impact of a bad death is far-reaching. Candy Chang, creator of the ‘Before I Die‘ wall, a global art project that invites people to reflect on their lives and share their personal aspirations on a public wall, describes the fallout as creating ‘circles of mayhem’ for generations.

What is a good death?

Every person will have a different idea about what would constitute a good death for themselves or their family. Much of the debate over end-of-life care comes down to two questions:

  1. Is a good death one where the medical team did everything to save a life?
  2. Is this still true if there is little chance or no of a happy outcome?

Culturally, we have always seen a good death as one we have ‘fought’ against. It may be time to consider otherwise. Many treatments are aggressive and futile, robbing the last remaining quality of life a patient has.

Perhaps a good death is the accepted one. One where the dying person is in control, can be at home, can have their pain and symptoms managed. End of life care must be entirely individualised and person-centred, only then can we begin to offer the excellent end of life care that everyone deserves.

when-hospitals-go-wrong

The refusal of a medical team to end active treatment to the detriment of the patient was exemplified in the death of a very close friend of mine. They threw everything they had at giving him longer than his twenty-something years. They didn’t give up ‘actively’ treating him until the end. He died clinging to the belief that he was going to live. That last precious year of his life was a tragic mess of chemotherapy, life-prolonging operations and colourless hospital wards. The treatment had destroyed the very essence of who he was, long before his heart played out its final beats.

I believe if we discussed end of life issues regularly, we wouldn’t find them so tricky to broach. Issues about death and dying should be taught in schools as part of the PSHE syllabus from primary and onwards. During Year 13 tutor time when we teach young adults to fill in job application forms, we should also be filling in advance directives with them.

Issues with control at the end

In a study by the Economist Intelligence Unit, the UK was crowned the best in the world for provision of end-of-life care. The author of the report, however, said that there is room for improvement, especially in symptom control and communication. Could this improvement be guided not by government policy or hospital administration, but by changing the way we look at death?

The recent BMA report concluded that some doctors continue to treat the dying when active treatment is no longer of any benefit. One reason it suggested was because of pressure from the patient and their loved ones. This is understandable – it is often too difficult to let go of the ones we love. The report also stated it is because if doctors acknowledge there’s nothing more that can be done, that they’re admitting defeat.

chemotherapy

I knew a woman worked with the dying so when she was dying, although she knew there was nothing that could be done, she didn’t want to die. She wasn’t ready: she had a life to lead, a world to see and children to watch grow and guide. She was looked after by the same medical team she had worked alongside for many years. They couldn’t let her die either. If they let her die, they would have failed one of their own. They had to try, even though they knew it was futile. They couldn’t give up, even though they knew the treatment she would most likely shorten her life, not extend it. Her original prognosis with palliative care had given her up to a year. She died two weeks into aggressive treatment, four weeks after her initial diagnosis.

We should not see the death of a dying patient as a failure. Death is not the loss of a battle. Death is a natural part of life. If we could see it that way, we might be able to approach it differently. Our goal should be helping someone live as good a life as possible right up until the very end. No one will ever experience a “good death” if our focus is active treatment at all costs.

senior woman

The report set out that treatment at end-of-life should be ‘appropriate and proportionate’. Dying with care, deference and dignity, and on our own terms is the very least we should be able to offer. A lady I worked with lived an incredibly full life: alone and happy. She went dancing and played snooker. She cooked everything from scratch everyday. Her breathlessness became untenable and she finally went to the doctor. She had cancer, which was slow to progress even though she chose a palliative care pathway. She accepted her life-limiting prognosis with the wisdom of one who knew herself well and contemplated mortality more often than many. She died in a hospice, surrounded by her family. Hers was a peaceful death. Peaceful and on her own terms.

One aspect of the report that I feel most strongly about is that doctors should be receiving training and CPD on communication and how best to have difficult conversations. One junior doctor who was interviewed for the report said: “I found it very difficult to talk to patients about dying, prior to working in a hospice, because…as a junior doctor we’re not taught very much…”

A shift in thinking

We all have to take responsibility for communication and the decisions we make. It’s terribly difficult when we’re unwell and vulnerable to hear these truths. If we’ve never considered end-of-life until our own life’s end it’s no wonder we find it so hard. If we discussed these issues regularly we wouldn’t find them so hard. We need to break down the ingrained cultural barriers that prevent us from talking about death and dying

Let’s all take on that responsibility. Let’s talk about it: openly and without fear. It’s too much to have that conversation for the first time when we are facing death. It’s much easier to talk about it while we’re living a healthy life.
We need to ask ourselves what is a good death for us.

Why do we value quantity over quality of time? Why do we cling so dearly to the notion that a life well lived is the longest? Sometimes doing nothing is the most courageous path. Sometimes accepting there’s nothing left that can be done is the bravest choice. Some may describe such a decision as “giving up”. Pursuing treatment until the very end, on the other hand, is lauded as “being a fighter”.

doctor and patient

Do these words,”battle” and “fight”, compound medical teams’ feelings of failure when an unavoidable and imminent death is in front of them? Changing our language may help us to change the way we think. Illness and death are a part of life. Loss is not a failure: not ours, and not our doctors’. Perhaps redesigning our expectations and language at end of life could begin with Paul Kalanithi’s beautiful words:“The physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.” If they did, I believe death and dying could be a richer and better experience for everyone involved.

Complete Article HERE!

How scared of death are we – and how does that affect us?

Our reluctance to talk about death is often taken as evidence that we are afraid, and therefore suppress thoughts about it

By Jonathan Jong

The database details criminality over 157 years until 1936, as well as chronicling the lives of some of the justice system’s more notorious enforcers
The database details criminality over 157 years until 1936, as well as chronicling the lives of some of the justice system’s more notorious enforcers

If death is the final taboo, it might not be for much longer. There has, in recent years, been increasing effort to promote conversations about death and dying, both in the home and in more public settings. For example, death cafes, first launched in Switzerland in 2004, have spread around the world, enabling people to speak about their fears over cake and coffee.

Our reluctance to talk about death is often taken as evidence that we are afraid, and therefore suppress thoughts about it. However, there is little direct evidence to support that we are. So what is a “normal” amount of death anxiety? And how does it manifest itself?

Experimenting with death

Judging by studies using questionnaires, we seem more bothered by the prospect of losing our loved ones than we do about dying ourselves. Such studies also show that we worry more about the dying process – the pain and loneliness involved, for example – than about the end of life itself. In general, when we are asked if we are afraid to die, most of us deny it, and report only mild levels of anxiety. The minority who report high levels of death anxiety are even considered psychologically abnormal – thanatophobic – and recommended for treatment.

On the other hand, our tendency to report only low levels of death anxiety might be a result of our reluctance to admit to our fear, to others and ourselves. Based on this hypothesis, social psychologists have, for almost 30 years now, examined the social and psychological effects of being confronted with our own mortality. In well over 200 experiments, individuals have been instructed to imagine themselves dying.

What’s worse: the death of a loved one or facing our own death?
What’s worse: the death of a loved one or facing our own death?

The first study of this kind was conducted on US municipal court judges, who were asked to set bond for an alleged prostitute in a hypothetical scenario. On average, judges who were confronted with their mortality beforehand set a much higher bail than those who were were not confronted – $455 versus $50. Since then, many other effects have been found among groups including the general population in many different countries.

Besides making us more punitive, thinking about death also increases our nationalistic bias, makes us more prejudiced against other racial, religious and age groups, and leads to other such parochial attitudes. Taken together, these dozens of studies show that being reminded of death strengthens our ties to the groups we belong to, to the detriment of those who are different from us.

Reminders of death also affect our political andreligious beliefs in interesting ways. On the one hand, they polarise us: political liberals become more liberal while conservatives become more conservative. Similarly, religious people tend to assert their beliefs more fervently while nonreligious people disavow more.

On the other hand, these studies have also found that thinking about death tempts us all – religious or otherwise – towards more religious belief in subtle, perhaps unconscious ways. And when the reminder of death is sufficiently powerful and when participants are not mindful of their prior political commitments, liberals as well as conservatives tend to endorse conservative ideas and candidates. Some researchersclaim that this could explain the US political shift to the right after 9/11.

What do the results mean?

But why does the prospect of death make us more punitive, conservative and religious? According to many theorists,reminders of death compel us to seek immortality. Many religions offer literal immortality, but our secular affiliations – such as our nation states and ethnic groups – can provide symbolic immortality. These groups and their traditions are a part of who we are, and they outlive us. Defending our cultural norms can boost our sense of belonging and being more punitive against individuals who violate cultural norms – such as prostitutes – is symptom of this.

Consistent with this interpretation, researchers have also found that reminders of death increase our desire for fame and for children, both of which are commonly associated with symbolic immortality. It turns out that we do want to be immortalised through our work and our DNA.

Thinking about death makes us dream of being famous.
Thinking about death makes us dream of being famous.

When asked, we do not seem, perhaps not even to ourselves, to fear death. Nor would we guess that thinking about death has such widespread effects on our social attitudes. But there are limits to our introspective powers. We are notoriously bad at predicting how we will feel or behave in some future scenario, and we are similarly bad at working out why we feel the way we do, or evenwhy we have behaved a certain way. So, whether we realise it or not, it seems that to bring death to the surface of our minds is to open Pandora’s box.

So what should we make of these new efforts to demystify death and dying through conversation? It is hard to say. Increasing death’s profile in our imaginations, private and public, might make us all more punitive and prejudiced, as the research found. But then perhaps we get these negative effects precisely because we are unaccustomed to thinking and talking about death.

In exposure therapy, carefully exposing patients to the source of their anxiety – an object, an animal, or even a memory – reduces their fear. In the same way, perhaps this most recent taboo-breaking trend will inoculate us psychologically, and make us more robust in the face of death.

Complete Article HERE!

WHAT’S THE BEST WAY TO DIE?

Given hypothetical, anything-goes permission to choose from a creepy, unlimited vending machine of endings, what would you select? Should you have the right to choose?

contemplating death

 

BY ROBYN K. COGGINS

After a particularly gruesome news story — ISIS beheadings, a multicar pileup, a family burnt in their beds during a house fire — I usually get to wondering whether that particular tragic end would be the worst way to go. The surprise, the pain, the fear of impending darkness.

But lately, I’ve been thinking that it’s the opposite question that begs to be asked: what’s the best way to die? Given hypothetical, anything-goes permission to choose from a creepy, unlimited vending machine of endings, what would you select?

If it helps, put yourself in that mindset that comes after a few glasses of wine with friends — your pal asks something dreamy, like where in the whole world you’d love to travel, or, if you could sleep with any celebrity, who would it be? Except this answer is even more personal.

There are lots of ways to look at the query. Would I want to know when I’m going to die, or be taken by surprise? (I mean, as surprising as such an inevitable event can be.) Would I want to be cognizant, so I can really experience dying as a process? Or might it be better to drowse my way through it?

Many surveys suggest that about three-quarters of Americans want to die at home, though the reality is that most Americans, upwards of 68 percent, will die in a hospital or other medicalized environment. Many also say they want to die in bed, but consider what that actually means: just lying there while your heart ticks away, your lungs heave to a stop. Lying around for too long also gets rather uncomfortable — as anyone who’s spent a lazy weekend in bed can tell you — and this raises a further question: should we expect comfort as we exit this life?

Sometimes I think getting sniped while walking down the street is the best way to go. Short, sweet, surprising; no worries, no time for pain. Sure, it’d be traumatic as hell for the people nearby, but who knows — your death might spark a social movement, a yearlong news story that launches media, legal, and criminal justice careers. What a death! It might mean something. Does that matter to you — that your death helps or otherwise changes other people’s lives? If there’s not a point to your death, you might wonder, was there a point to your life?

These are heavy questions — ahem, vital, ones — that don’t seem to come up very often.

I got curious about how other people would answer this question, so I started asking colleagues and friends for their ideal death scenarios (yes, I’m a blast at parties). I heard a wide variety of answers. Skydiving while high on heroin for the second time (because you want to have fun the first time, according to a colleague). Drowning, because he’d heard it was fairly peaceful once the panic clears. Storming a castle and felling enemies with a sword to save a woman, who he then has appreciative sex with, just as he’s taking his dying breaths. (That poor gal!) An ex-boyfriend of mine used to say that the first time he lost bowel control, he’d drive to the Grand Canyon and jump off.

My own non-serious answer is to be tickled to death, sheerly for the punniness of it.

002

Anecdotally, young men were more fancy-free about their answers, while the older folks and women I spoke with gave more measured answers or sat quietly. Wait, what did you ask? I’d repeat the question. A pause. Hmm.

One old standby came up quite a lot: dying of old age in my bed, surrounded by family. The hospital nurses I asked had a twist on that trope: in bed, surrounded by family, and dying of kidney failure. Among nurses, there was consensus that this is the best way to go if you’re near death and in intensive care — you just fade out and pass, one ICU nurse told me. In the medical community, there’s debate about how calm death by kidney failure actually is, but really, who can you ask?

These answers are all interesting, but my nurse friend got me wondering about people who deal with death on the regular — what do they think about the best death? Do they think about it? Surely hospice workers, physicians, oncologists, “right-to-die” advocates, cancer-cell biologists, bioethicists, and the like have a special view on dying. What might their more-informed criteria be for my “best death” query?

I started with a concept that I think most can agree with — an ideal death should be painless.

***

Turns out, a painless death is a pretty American way to think about dying.

Jim Cleary, a physician in Madison, Wisconsin, specializes in palliative care, cancer-related pain relief, and discussing difficult diagnoses with patients. “Eighty percent of the world’s population lacks access to opioids,” he tells me. That includes morphine, fentanyl, oxycodone, and many of the other drugs used to soothe patients in the United States. Cleary is director of the World Health Organization’s pain and policy studies group, which is working to get these relief drugs to other nations to help those in need — burn and trauma victims, cancer patients, and women giving birth.

In his work with American cancer patients, he’s careful not to suggest that dying will be comfortable. “I can’t promise ‘pain-free,’” he says. What he can promise is that he’ll try his best to help patients end their lives as they wish. “Listen to your patients,” he tells his colleagues, “they have the answers.”

Cleary says you can lump the different ways we die into categories. The first is the sudden death. “That’s not going to be a reality for most of us,” he’s quick to point out. The other category is the long death, which is what most of us will likely experience. “The reality is death from cancer,” says Cleary, “where you actually know it’s going to happen, and you can say goodbye.”

According to the American Cancer Society, a man’s risk of dying from cancer is 1 in 4, and a woman’s 1 in 5. (It’s important to note that those numbers are just for dying from one of the many types of cancer, from bladder to brain, prostate to ovaries. The odds that a man will develop cancer are 1 in 2; for women, 1 in 3. Reality, indeed.) In long-death cases, most care does not extend life so much as extend the dying process, a fact noted by many end-of-life experts, from surgeon and author Atul Gawande to hospice patients.

Cleary thinks the idea of a “best” death or even a “good” death is a little misleading, as if it’s a competition or something one can fail at. He prefers the term “healthy dying,” which isn’t as oxymoronic as it sounds. To him, healthy dying means that death is “well-prepared for, it’s expected, and other people know about it.”

003

“We as a society have to do much, much more on accepting death as a normal part of living,” he says. “So rather than even talking about what’s ‘the best way to die,’ how do we normalize dying?” In a country where funeral parlors handle our dead and corpses no longer rest for days in our own parlors at home, we’re rather removed from the whole ordeal.

Still, I press Dr. Cleary to answer the question at hand: How would he choose to die? “Would it be sudden death walking along a beach in Florida?” he ventures, then quickly reconsiders. “But if your family doesn’t know you’re dead — dad goes for a walk or run and doesn’t come back — is that good for them? It may be good for me, but it may not be good for them.”

***

In many American hospitals, you’ll find representatives from No One Dies Alone (NODA), a nonprofit volunteer organization formed in 2002 by a nurse named Sandra Clark. NODA’s founding principle is that no one is born alone, and no one should die alone, either.

NODA volunteers work in groups of nine. Each carries a pager 24 hours a day during their assigned shifts, so that one of them is always available to attend a death. Usually, a nurse makes the phone call summoning NODA volunteers. The vast majority of people who NODA visits are comatose. But that makes no difference, the principle abides; comatose or not, it’s still important for someone — anyone — to be present.

Anne Gordon, NODA’s current program director, has helped hospitals around the country start the program in their facilities. She has a worldly perspective similar to Cleary’s, and different from the expectations that most Americans have on the topic of death.

“Dying is a process, not [just] the last breath,” says Gordon. If you’re a hospital patient in the process of dying, there’s a specific protocol to qualify for NODA services. You need to be actively dying — estimated to pass in the next day or so. (“Seasoned nurses can tell,” Gordon says, which is why they’re often the ones to page the NODA volunteers.) You must have reached a point where you will not receive any further interventions — that means comfort care only, with a required “do not resuscitate” order. And you must be without family or friends who can keep you company as you pass away.

Nobody? How does it happen that a person has nobody to visit when they die?

“Sometimes a person’s outlived everyone, or they’re estranged,” Gordon explains. Maybe they do have family, but for whatever reason, the loved ones needed to leave, or live far away, or just cannot bear to be present. Some of the patients are homeless and, just as in their healthier days, have no one to comfort them. Whatever the reason, NODA will be there.

004

As Gordon sees it, death is an act of meaning, and the process — what she calls “the human family coming together” — is an act of intentionality and love. “I find the whole process to be so compelling,” she says. “It’s our shared experience — a key transition we all share.”

Gordon, a Baby Boomer, sees her work and the recent public interest in end-of-life issues as a byproduct of her generation aging — an extension of the consciousness-raising of the 1960s and “one of the good echoes” from that era, she quips. “As we get closer to death, we like to talk about these things.”

There are “death cafes,” informal coffee hours where friends and strangers get together, eat cake, and talk about dying. There are high-demand conferences where people share their personal experiences of loss and grief. There are bestselling books about coming to terms with your own mortality and how to prepare for death — spiritually, familially, and financially. Even Costco, the bulk-retail giant, sells coffins alongside its low-price tire changes and discount cruises. It’s mostly just static noise, though. Death is never fully discussed, only hinted at from the margins.

Gordon believes that now — with Baby Boomers entering retirement, many losing their parents, and many more coming to grips with their own mortality — is the moment to talk through these issues as a culture, to discuss the process of death in specific terms, beyond the anecdotal and platitudinal. “When death is a daily concept,” as it might be in Bhutan, she offers, “it’s not as terrifying. What matters is quality of life.”

When I ask Gordon how she’d like to die, she demurs. “I have no answer. I figure it’ll be what’s appropriate for me.”

***

Pamela Edgar is an end-of-life doula and drama therapist in Brooklyn, New York. Similar to how birth doulas help pregnant women bring new life to the world, end-of-life doulas help people on their way out.

Edgar grew up with a mom who worked in nursing homes, and young Pamela sometimes tagged along, visiting people at different stages in their lives, including the final ones. As she grew older, Edgar got especially interested in those last months: “What is the kind of relationship that you can have with someone when it might be one of their last new relationships? What can that be like?” she wondered.

Edgar has worked in nursing home dementia units and other late-life facilities for the past eight years. After working in a Veterans Administration hospital during an internship as a creative arts therapist, she requested to go to the hospice unit. (“Nobody ever asks to do that!” she remembers her supervisor replying.) For the past three years, she’s been an end-of-life counselor with Compassion & Choices. The organization is primarily known for advocating right-to-die legislation at the state level, but it also helps anybody seeking assistance to “plan for and achieve a good death.”

“As a drama therapist,” Edgar says softly, “I look a lot at roles that people play in their life, and one of the things that I really see — and this is a little bit related to a good way to die — I see that for a lot of us, a lot of our lives are spent doing. What can we do for other people, how we define ourselves by these roles that are really about what we can do, or what we have. And as people get older, of course, that role system gets smaller, and often people can’t do all the things they used to do. I think it’s really an interesting moment for people then: What is their identity, and who are they now?”

For many, dying becomes about control and autonomy, she says. “Here are the things I still can do and what I can still control are really important for some people.”

Others get spiritual. Edgar shares the example of a patient in his 70s who’d been diagnosed with ALS and lost the ability to do many of the things he loved. “He decided that he was ready, and he and his wife kind of describe it that ‘his spirit had outgrown his body.’ He was on hospice care and he chose to stop eating and drinking, and the wife had a lot of support, and hospice was really excellent and supportive of them. It was a very peaceful passing for him.”

Peaceful. Especially given the circumstances of a degenerative illness, “peaceful” seems like an indispensable criterion for the “best” death.

005

Edgar has been particularly affected by seeing choice taken away from patients. Many of the people she worked with early in her career wanted to go home but, because of what she calls the country’s “medical model” of dying, never were able to. After helping hundreds of people with their deaths — filing wills, deciding on final treatments, aiding loved ones with the transition — she’s developed an idea of a good death that’s based on her background in psychology. You’ve heard it before: letting go.

“Ultimately, we are going into an unknown,” Edgar says. “Even when people think or have ideas about what’s next, truth is, we don’t have proof. So there is that sense of going into an unknown and do people feel ready — body, mind, and spirit? Are they really ready to go?”

Sometimes, Edgar says, the body and mind are ready, but the person isn’t emotionally there yet. Or vice versa — the person feels spiritually ready, but their body’s still holding on.

“My personal answer for the best way to die is being ready, like being physically, emotionally, spiritually ready to go.”

Before we end our conversation, she stresses a point to me: “Life and death are not opposites,” she says. “We haven’t figured out how to stop either. They’re partners.”

***

In the autumn of 2014, the story of Brittany Maynard incited conversations on this topic in average American living rooms. Maynard, a 29-year-old newlywed, was diagnosed with an incurable brain cancer that gave her seizures, double vision, headaches, and other terrible symptoms that inevitably would intensify until her almost surely agonizing death.

As she looked at that future, Maynard decided that she wanted to end her life on her own terms with the help of legal medication. Unfortunately, she lived in California, which didn’t allow doctors to write life-ending prescriptions. So Maynard, her husband, and her mother packed up and moved to Oregon, where the right to die is legally recognized.

Through the ordeal, Maynard partnered with Compassion & Choices to spread the word about her journey for a good death. Her story appeared on the cover of People magazine, was featured on CNN, the Meredith Vieira Show, in USA Today, in the op-ed pages of the New York Times — you name it. Such a young woman facing such a terrible fate: it’s compelling, even wrenching, and hard to turn away from.

Disregard your personal beliefs on the morality of this situation for a moment, and think about what you would do in the face of an agonizing terminal diagnosis. Would you seek medical care until the very last breath, demanding chemo from your deathbed? Or would you prefer to go without, letting the disease take its natural course? Which path do you fear the most?

After Brittany Maynard

David Grube is an Oregon family doctor who, in his own words, has “delivered babies and sung at people’s funerals.” He wants to die “feeling perfectly well, and just not wake up.” Over his 35-year career, he has prescribed life-ending drugs to about 30 patients (though “aid in dying,” as it’s often called, only became legal in Oregon — and for the first in time the United States — in 1994). He did not prescribe Maynard’s medication, but he did talk to me about the process of aiding in a patient’s death.

Grube, who is the medical director for Compassion & Choices, says that though many people ask for the drugs, few end up using them. The prescriptions require a psychological evaluation, sign-off from two different physicians, and a 15-day waiting period before they’re available. The fatal dose will be a barbiturate like pentobarbital, a sedative that’s also used in animal euthanasia — it’s the same drug as the “sleeping pill” that killed Marilyn Monroe, Grube notes — or secobarbital, a bitter anesthetic and sleep aid. Someone like Brittany Maynard would likely stir the drug into a glass of juice, drink it, then await its effects.

In her final message to the public, Maynard wrote, “The world is a beautiful place, travel has been my greatest teacher, my close friends and folks are the greatest givers. I even have a ring of support around my bed as I type. … Goodbye world. Spread good energy. Pay it forward!” Her husband, Dan Diaz, said that as she took the medication, “The mood in the house was very peaceful, very loving.” Within five minutes, she fell asleep. Then she died.

Grube says that’s usually how it goes with these cases: within an hour or two, the person stops breathing and experiences “a peaceful, simple death.” On the rare occasion when the patient takes the medication with a glass of milk or with a large dose of anticonstipation medication (vanity doesn’t automatically disappear with terminal illness), they will sometimes wake up. But when taken as prescribed, most people who choose to end their life this way will, like Maynard, pass with tranquility. It is, in a word, peaceful.

Another term for Maynard’s act is “physician-assisted suicide,” but Grube rejects that concept wholeheartedly. “They don’t want to die!” he says. “‘Suicide’ is such a harmful word … and words are scalpels; they can be healing, kind, or destructive.” Some of Grube’s allies prefer the term “physician-assisted dying,” while others talk about the “right to die.” Compassion & Choices has settled on its own values-based language to discuss cases like Brittany Maynard: “death with dignity.” Partly due to Maynard’s activism, the California legislature and Governor Jerry Brown passed the “End of Life Option Act” this October, just before the one-year anniversary of her death.

Grube says most people who ask for these prescriptions are educated, motivated, and confident. What they want, he explains, is to determine the timing of their imminent death.

Control. When a disease is controlling your body and mind, when you’ve lost pleasure in the things you once loved, when you’re in pain, when you’re suffering and you fear burdening those around you, when there’s nothing more to do but wait for death, having the power to take — or not take — life-ending drugs can be a supreme comfort. But it’s a fine line of morality.

As a philosopher and bioethicist at Vanderbilt University, John Lachs considers these situations all the time. His mother, Magda, lived to 103, but given her ever-increasing collection of age-related illnesses, he wrote in Contemporary Debates in Bioethics, “living longer seemed to her utterly pointless: the pain, the indignity and the growing communicative isolation overshadowed her native optimism and the joy she had always taken in being alive. She decided that she had had enough and she was ready to die.”

NobodySurvivesLife

Magda stockpiled prescriptions, ready to overdose on them, but lost them in a move, according to her son. She tried to die by abstaining from food and drink, but, as Lachs put it, “there was enough love of life left in her to make this a regimen she could not sustain.”

Is it okay to help someone else die? Lachs argues that “doctors should help us through every stage of life,” including the final one. Furthermore, exercising freedom — in this case, the freedom of choice to end one’s life — is not the same as following moral rules. “We have the right to terminate our lives even if it is wrong to do so,” Lachs says — with an important caveat. “Healthy young adults who propose to kill themselves cannot demand aid from others. … The situation is altogether different with suicide that is justifiable.”

To Lachs, context is of the utmost importance. “We don’t want people to choose death over life,” he tells me. But when the end is near anyway, and the person is suffering, what’s the argument against it?

  1. The philosopher has developed a set of five standards for the ideal death:
  2. It must be after a person has exhausted his purpose; there’s got to be nothing more for him to truly do.
  3. Corresponding to the loss of purpose is a lessening of energy — mental and physical.
  4. The person’s affairs should be in order — paperwork, wills, goodbyes, all of it.
  5. The person should feel he’s leaving something good behind — “I didn’t live for naught.”
  6. The death should be quick and painless.

Lachs has seen and heard of people who are near death but linger on. “It’s so much better when the other conditions are met and they just pass on,” Lachs says. “Ideally, life is such that it gives you a chance to get ready for death.

“Nobody has ever survived life. The bet is going to be lost. All of life is uncertain. We think it’s not, and contingency is the name of the game. But ultimately, we’re going to have to come to terms with the end of it.”

Magda, Lachs’ mother, finally did pass in the “subterfuge” way that hospice workers sometimes quietly administer: a nurse offered a morphine solution that depressed Magda’s lung function and finally accelerated her death.

What’s the best way to die? It’s a question that Lachs has spent time considering. His favorite answer comes from a medical colleague of his, but it’s an old yarn: being shot to death at 90 years old by an irate husband while biking away from sleeping with the gun-toting man’s wife.

Barring that, Lachs says, he’d like to die having met his own criteria — quickly, of a heart attack.

***

One of the last people I posed my question to was Doris Benbrook, director of research in gynecologic oncology at the University of Oklahoma. Her specialty is much different from the health care staff I’d spoken to previously — she studies cancer on the cellular level, particularly apoptosis, or programmed cell death. Does the microscopic level of dying give us any other ways to think about the best way to go?

In its most basic sense, a cancer cell over-multiplies and begins causing bodily trouble. “At the organ and tissue level, it eats away at vital organs. It grows, duplicates, divides.” That clogs up organs, cascades into other systems, and makes its body croak. How utterly unfair of something so tiny. Some cancers you barely feel, like the notoriously silent ovarian cancer, while others, like bone cancer, cause immense, deep pain.

Benbrook’s work with apoptosis aims to switch off that growth, to figure out how to flip the cell’s existing kill-switch so it can’t wreak such havoc. Years from now, she hopes, doctors could even use this mechanism as a cancer-prevention method.

Interestingly enough, CPR and other familiar cardiovascular attempts to keep people alive take the opposite tack: “They want to prevent cell death,” Benbrook notes. So there are many different ways to think about what the end of a cell means for the end of the human. But cells die constantly, and a few cells dying here and there don’t kill a person. Even though our cells die with us, she stressed that the microscopic level isn’t the right place to look when considering dying.

Her personal answer to the best way to die, however, was my favorite, if only for its imagery.

“I would like to die by freezing to death,” she says. “Because from what I understand of the process, it’s that you eventually just go numb and don’t feel anything. I have experienced extreme pain. I don’t ever want to do it again. I would like to go peacefully.”

Interesting. But it’s where she’d like to freeze to death that moved me.

“I would think that if I were to just sit on an iceberg floating up in the Arctic Ocean, that it would be a peaceful death. I could look up at the stars, I could think about life, and it could be a good experience.”

The frozen night air blowing over your body. The dead quiet of nature interrupted only by laps of the ocean and the occasional fish flopping out of the water. The icy sensation of your tears freezing as you look up at the Great Bear constellation for the last time. That really doesn’t seem like such a bad way to go.

006

But Benbrook and I come quickly back to land. “Of course I would like to have my family surrounding me, and the chances that I’m going to go sit up on an iceberg in the Arctic Ocean to die — that is not likely.” She laughs. “I’d probably be laying in a bed surrounded by loved ones. My goal would be to go peacefully.” Back to the beginning.

***

So I turn to you, brave and patient reader: from the absurd to the probable, how would you like to die? Allow yourself to think about it, in as far as you’re ready to do so. Do you want a breathing tube snaked down your throat if it becomes necessary? Do you want to be fed if you can’t do it yourself? Would you mind dying in a hospital? You can even get down to ambient details — do you want punk music blasting, a warm room, someone rubbing your swollen feet?

Whatever you wish, however deeply you’re willing to think about it, the key is to share your ideas about a good death. Talk to your family, write down what you want, and keep it somewhere they know about. Ask people about it at parties. As anyone who’s made a “pull the plug” decision can tell you, any guidance you leave will be helpful if you can’t speak for yourself on your last day.

This is your last possible decision, after all — better make it a good one.

Complete Article HERE!

Seattle nurse vows to create region’s first hospice for children

 


She pages through a book of photographs filled with the faces of children. And the letters they’ve written.

The images are of young people who lost their battle with cancer, but spent their final months expressing thoughts about life, love and hope.

Suzanne wants to make sure those final months can someday be spent not in a hospital, but in the nurturing environment of a children’s hospice.

“We can do this,” said the oncology nurse, who has worked at Seattle’s top hospitals. “We can set an example and a template for the rest of the country and show them what can happen when a community comes together and cares about their children.”

This has become Suzanne’s mission since she learned years ago that there are only two children’s hospices in the entire country. Not one in all of the Pacific Northwest, not even Seattle.

“Because it makes people feel uncomfortable nobody’s talking about it and therefore nothing is being done,” said Suzanne.

She has more than thirty years of experience taking care of cancer patients, mostly children.

“Somebody needs to do this. I’m somebody,” she said. “So I founded Ladybug House.”

For the past two years Suzanne has dedicated herself to organizing, advocating and fundraising on a quest to transform her idea into reality.

Ladybug House has gained momentum and support, but what the project needs most is $12 million and a 3-to-5-acre plot of land to start build what she envisions to be a state-of-the-art facility serving young people in need of hospice care.

While some families of terminally ill children are able to take their children home, the burden on parents can be overwhelming.

Gienna Njie is a mother who was stunned to learn there was no hospice option for her daughter, Ahmie, who passed away June 14th after battling a rare sarcoma.

“Kids do die and kids do suffer and they need a place where they can go to be happy,” Gienna said. “It’s so important that kids and their families can live in the moment in the last days and do some amazing things and have memories.”

And that, according to Gienna and Suzanne, is the unique setting a hospice can provide. Hospitals, they say, provide excellent care, but the end-stage of life does not have to unfold in a clinical setting.

“Ladybug house will be a place not just about end-of-life care,” Suzanne said. “It’ll be a place where families have a break during the unimaginable, during those hard times. They don’t have to be the caregivers all the time. They can be cared for.”

The hospice will also provide opportunities for children to express themselves through art, to have pets available and to interact with other families going through the exact same experience.

Suzanne’s plan calls for suites where families can sleep overnight for extended periods of time, and communal kitchens where people can cook their own meals or have meals prepared for them.

“It’ll be a place where legacies and memories can be made and where families can celebrate every day,” she said.

Gienna says it was a privilege to be the primary caregiver to her 14-year-old daughter, but the stress of becoming a de-facto home nurse was daunting at times.

“I would not have wanted to be anywhere else, but it was exhausting and it took away from actually being able to spend as much quality time with her, to just be a family without worrying about oxygen tanks and medications,” she said.

Gienna describes her daughter as strong, creative and filled with exuberance for living life to its fullest.

“She was somebody who could walk into a room and everybody would smile and say, ‘who is that beautiful girl?'” Gienna remembers. “Ahmie was well-loved and she was such a phenomenal person and a loving person.”

In the moments when Ahmie was in greatest pain, they would touch their heads to one another and focus on breathing. And then they would talk.

“We started to have conversations about what we could do to help other children that were suffering,” said Gienna. “I said if you’re not here I will make sure that children don’t suffer as much as you have had to suffer.”

Gienna learned about Suzanne’s mission to provide a hospice option to children like Ahmie.

When moments of discouragement or frustration arise, Suzanne finds inspiration in that book of children’s photos and letters.

“When I think I can’t do it any more I look in here and remember that I don’t have a choice,” she says. “This isn’t about me. It’s about them. It’s about them and their families and that they all deserved better.”

Suzanne says the U.S. Is far behind other countries when it comes to providing hospice care for children. There are more than 50 in the United Kingdom, 8 in Canada and 5 in Australia.

The children’s hospices in the U.S. are in California and Arizona.

It is frustrating for Suzanne and her supporters that there are about 3,000 hospice facilities for adults in this country and 400 for pets.

560,000 children across America are currently living with life-limiting illnesses.

Ladybug House has adopted a mission statement: “If we cannot add days to the life of a child, we will add life to their days.”

When you meet and listen to Suzanne Gwynn, you leave believing that she will succeed — that in the near future Seattle will have a hospice that will transform the lives of children and their families.

The following links provide more information about Ladybug House and how people can help. www.ladybughouse.org

Complete Article HERE!

Will California’s end-of-life law push lethal drugs over costlier care?

Kevin McCarty, Susan Talamantes Eggman, Jay Overnolte
Assemblywoman Susan Talamantes Eggman (D-Stockton) is congratulated by Assemblymen Kevin McCarty (D-Sacramento), left, and Jay Obernolte (R-Big Bear Lake) after her right-to die measure was approved by the full Assembly in September.

By Soumya Karlamangla

Terminally ill cancer patient Barbara Wagner’s doctor wrote a prescription several years ago intended to extend her life a few extra months. But Oregon’s government-run healthcare program declined to pay for the pricey drug, saying the projected odds of the medicine’s keeping her alive were too low.

Adding to the distress of the rejection, Wagner later complained publicly, was what else was included in the denial letter she received. The state listed doctor-aided death as one of the treatment options that would be completely covered.

“[They] basically said if you want to take the pills, we will help you get that from the doctor and we will stand there and watch you die, but we won’t give you the medication to live,” Wagner said in a television interview at the time.

Wagner’s case became a flash point of the medical ethics debate over helping the terminally ill end their lives in Oregon, the state that pioneered the practice in the U.S. nearly two decades ago.

Now, as California pushes ahead with a similar initiative, experts say state officials here could face their own ethical controversies as they weigh details such as who should pay for life-ending care, particularly for patients in government-backed health plans.

Covering lethal prescribed drugs for such patients without also offering to pay for other far more costly end-of-life treatments could inadvertently pressure people into choosing the cheaper option, said Dr. Aaron Kheriaty, a UC Irvine psychiatrist and director of the university’s medical ethics program.

“It’s certainly a cost-saver,” he said.

Supporters of California’s law and other experts say it ensures life-ending decisions will be left to patients and that covering drugs that aid in dying won’t push people to make that choice. So few people will opt for doctor-assisted deaths, they argue, that the financial savings will be tiny compared with overall healthcare costs and won’t create a significant economic incentive for insurance carriers to even subtly encourage that medical alternative.

Under California’s End of Life Option Act signed by Gov. Jerry Brown this month, physicians, starting sometime in 2016, will be allowed to prescribe lethal drugs to adults diagnosed with terminal illnesses who are expected to die within six months and request assistance to end their lives.

The law does not require private insurance companies to cover such medicine. And state officials with Medi-Cal, the health program for the poor that covers more than 12 million people, say they haven’t determined whether their plan will pay for such treatments.

A state legislative committee analysis concluded that any costs or savings for Medi-Cal from legalizing doctor-aided death would be minor, depending on whether the lethal drugs are covered. The biggest projected expenditure would be about $323,000 to set up and operate a data system to manage paperwork associated with the program.

Many health advocates and experts expect Medi-Cal, like Oregon’s state-run health plan for the poor, to cover the life-ending treatment.

William Toffler, a family physician in Oregon, says California would be making a mistake. He contends that Medi-Cal officials would be forced into a new and significant ethical dilemma, balancing their responsibility to control costs and ration care with ensuring that patients receive the most effective medical treatment possible. The barbiturates prescribed to patients to end their lives cost about $1,500. Average healthcare spending in a patient’s last year of life is $33,486, according to federal data.

“It’s a terribly wrong-headed move. It’s a conflict of interest for doctors; it’s a conflict of interest for the state,” Toffler said.

Vermont and Washington — which more recently permitted physicians to write lethal prescriptions — and the federal government’s Medicare health plan do not cover the drugs. Representatives from both state programs declined requests to discuss their reasoning.

Officials from Oregon’s health plan say that physician-assisted death is just one of many covered medical options offered to terminally ill patients, along with hospice care and pain medications.

Wagner was told in 2008 that she had only a few months to live. She was prescribed a medicine that might have extended her life for a limited time, at a cost of $4,000 a month. Oregon’s health plan denied coverage, based on a policy that requires treatments to provide at least a 5% survival rate after five years.

Advocates said the case was blown out of proportion by the media and critics. The denial of the costlier drug wasn’t because of its price, but its low efficacy, they said.

“Barbara Wagner was not harmed by the Oregon aid-in-dying law. She was not harmed by the Oregon Medicaid system,” said Barbara Coombs Lee, president of the groupCompassion & Choices, which pushed for the law.

After the media focused on the case, the manufacturer of the drug prescribed by Wagner’s doctor offered her the pills free of charge. She died soon thereafter.

Oregon health officials subsequently halted the practice of listing lethal drugs as an alternative treatment offered to terminally ill patients who were denied other treatments under their coverage.

“I think the state Medicaid system learned to be a little more tactful,” Coombs Lee said.

Apparently learning from Oregon’s experience in Wagner’s case, California lawmakers included in the new legislation that insurance plans are prohibited from including in a treatment denial letter information on the availability of aid-in-dying drugs.

Christian Burkin, a spokesman for Assemblywoman Susan Talamantes Eggman (D-Stockton), who wrote the bill, said that “no one should be subjected to even the appearance or suggestion of being influenced to choose the end-of-life option.”

Some fear the pressures to choose assisted death could be more subtle.

Daniel Sulmasy, a physician and medical ethics professor at the University of Chicago, concluded in a 1998 research study that physicians inclined to conserve resources were more likely to write lethal prescriptions for terminally ill patients than those not concerned about keeping costs down.

That’s particularly worrisome, Sulmasy said in an interview, as California tries to manage the growing costs of Medi-Cal.

Under Obamacare, about a third of all Californians are now covered by the program, and its costs have climbed 74% since 2013 to more than $91 billion a year.

The federal government covers most of the costs but will begin shifting the expenses to the state after next year. California is already struggling with an $18-billion annual contribution, and that will rise in coming years.

Sulmasy also argues that as lethal treatments for the dying become more common, patients could face societal pressures from friends and relatives to unburden their caregivers or avoid racking up medical bills that drain family wealth.

But Oregon patient data have shown little evidence of that, says Coombs Lee, who was a nurse before she cowrote Oregon’s Death With Dignity Law. Of the roughly 860 people who have died in this way in Oregon since the law was enacted in 1997, 98% had state or private health insurance — and private plans tend to cover more end-of-life medical treatments.

Coombs Lee pointed to a new study that shows Oregon has some of the nation’s highest rates of hospice usage — and lowest levels of potentially concerning hospice care. She said that indicates, overall, that the state’s death with dignity law is improving end-of-life care.

“There’s no red flags,” Coombs Lee said.

Ezekiel Emanuel, an oncologist and bioethicist at the University of Pennsylvania, said that doctor-aided death for the terminally ill doesn’t offer insurers much opportunity to cut expenses.

“It’ll have an almost undetectable impact on healthcare costs,” said Emanuel, who helped draft the federal Affordable Care Act.

A 1998 study he conducted estimated legalization of lethal prescriptions nationwide would save less than 0.1% of total healthcare spending, chiefly because very few people would want them.

“It’s a law for the 0.1%,” he said.
Complete Article HERE!