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 Doorwas 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.
Portrait of Alan Johnson who is in the ‘Return To The Closet?’ documentary
By Shan Ross
Baby boomer LGBTQI people in care homes are “de-gaying” themselves to hide their sexual or gender identity for fear of bullying and discrimination from staff and other residents, a film maker has said.
Glenda Rome’s film, Return To The Closet?, featuring Scots who lived in some of the toughest times to be gay, will be premiered at the CCA in Glasgow on 1 May, 2019, at the launch of the month-long 2019 Luminate festival for older citizens.
The documentary is released in the same year as the 50th anniversary of the Stonewall riots in Greenwich Village in New York, which saw a week of rioting breaking out after police raided the Stonewall Inn gay club in the early hours of 28 June, 1969.
The event was hailed as being a catalyst for the modern fight for the gay rights movement in the US and around the world.
Older LGBT people in care or who have carers visiting their homes have spoken of “de-gaying” their living space by removing photographs of themselves with a same-sex partner and mementoes of their past.
Others say they are afraid of how other residents will treat them if they reveal their sexuality.
However, Rome, commissioned by Luminate and LGBT Age, to make the film, said one of the most shocking things uncovered during research and extensive interviews was that many care homes report they have no LGBTQI residents.
“The idea of older people feeling they have to ‘go back into the closet’ is terrible. It’s something people are just starting to think about now and the last thing we need is for the progress that has been made, which was hard-won for a generation who lived through the criminalisation of their sexuality, to be undermined.
“The real value of this film is not about creating answers but about inspiring an important conversation.”
Homosexuality among men was illegal in Scotland until 1980 – lagging 13 years behind the law in England and Wales.
This was a factor behind former lecturer Alan Johnson, 77 – who lives in Largs, and appears in the documentary – leaving Scotland in the mid-60s, after graduating from the University of St Andrews to move to London.
“My decision to move to London was in large measure related to escaping from then Presbyterian, and distinctly homophobic, Scotland to a more liberal and welcoming environment where gay venues (bars, clubs and other meeting places) were already more established and accepted.
“Many of my friends did likewise around the same time, and for the same reasons.
“When I was a teenager in Scotland in the mid-1950s same-sex relationships were illegal, criminalised, condemned and pathologised; the word ‘gay’ was not in use; religious intolerance was widespread; and ‘coming out’ (least of all to my churchgoing parents) was quite impossible.
“Fortunately, so much has changed for the better in recent years – but this repression has left a near indelible mark on many older LGBT people, particularly so in Scotland. Many of us speak about this in the film.”
Johnson added: “The whole point in making this film was to influence carers, particularly in care homes.
“There are people who have had all sorts of bad experiences in care homes or when receiving care at home because of their sexuality.
“In general, before you need help, it can be quite common to be ‘out’ to some people but not all. But once you are in residential care that living space becomes your home and you should feel safe and have freedom to be honest about how you live your life.”
Liz Haggart, in her late-60s, from Edinburgh, who also appears in the documentary, said she and her LGBT friends had been speaking about their fears if they need care in the future.
“We’ve spoken about this a few times. We’re really worried about it.
“But the thing is, there’s probably a lots of gay people in the care sector, scared to come out, wondering how the rest of the staff would treat it.”
Donald Macaskill, chief executive of Scottish Care, who will take part in a Q and A session following the screening, said: “In order to become a carer staff must have a qualification, usually a SVQ3 covering equality and diversity. So in terms of the workforce I’m sure there will only be a tiny minority who may not choose to address the issue sensitively.
“Another factor to bear in mind is that any residents in a care home living with dementia may be less inhibited about expressing opinions which they held years ago, sometimes giving offence to others.”
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.
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.
End-of-life treatment guidelines would help families, physicians and nurses confront the inevitable with care and compassion.
By Theresa Brown
My patient, an octogenarian with pneumonia and acute leukemia, was too frail to tolerate the standard treatment for his cancer, and trying to cure his pneumonia with intravenous antibiotics, when the leukemia had already compromised his immune system, would only have weakened him further. It made sense to switch him to “comfort measures”: to focus on alleviating his suffering rather than curing him.
It would also make sense to have general treatment guidelines for situations like this, guidelines to indicate when comfort, not cure, is most appropriate. But no such guidelines exist.
Which is why the patient’s family physician could come to the hospital, imagining himself as the cavalry, and switch the patient back to active treatment, including full resuscitation if he had a cardiac arrest. The patient was so sick that active treatment necessitated intensive care.
I took him to the intensive care unit myself. When I got there, I got into an argument with the receiving nurse about the patient’s status.
Looking to defuse the situation, the nurse apologized. “I hate these cases where there’s no point to what we’re doing,” he said.
No point. The patient’s stay in intensive care was the clinical equivalent of bailing out a sinking boat. He might gain a little time, but not much.
Modern health care accomplishes great feats of healing every day. But life ends; there are patients for whom real healing has become impossible. Their bodies have simply taken too many hits. Aggressive care can push back their death for a few days, but it is unlikely to keep them from dying soon.
These situations tend to be obvious to clinical staff, and especially nurses. We administer the hands-on care. But for those around us — physicians, families and the hospital generally — they are not at all clear, and too easily clouded by emotion. That’s why we need end-of-life treatment guidelines.
Such guidelines exist for a host of conditions: cardiac arrest, diabetes, depression. Though they can be controversial — viewed as too restrictive in some cases, in other instances too loose — they set a bar for an appropriate course of care.
‘He Nodded, Apparently Took the Sign Literally and Rushed Up the Steps’
A simple treatment guideline for clinical situations like my octogenarian patient’s might look like this: For patients who have one terminal illness that is either resistant to treatment or can’t be safely treated, combined with a second very serious illness or complication, along with a high degree of physiological frailty, physicians should consider comfort measures instead of cure.
To me, a hospice nurse, this guideline reads like common sense. But doctors who look at patients primarily as collections of individual problems, rather than very sick individuals, can miss the obvious.
Another patient I cared for in the hospital had received a liver transplant, was H.I.V. positive, and had been newly diagnosed with lymphoma. One of his sisters recited his physician’s hope-filled words back to me: “His body isn’t rejecting the liver, his H.I.V. is under control and his lymphoma can be treated.” His mental state had deteriorated to the point that he routinely tried to eat his own feces, but that symptom wasn’t considered relevant.
Health care has many financial incentives that encourage continued treatment, no matter how pointless. Liability issues arise too: Some physicians worry about being sued if they stop aggressive care for dying patients.
But my experience in hospice suggests that the fundamental issue is more basic: lack of time. According to the family of one patient I cared for — 94 years old, septic, minimally conscious, with an intestinal obstruction and a new diagnosis of cancer — no one told them how very ill she was. I would guess the staff didn’t have time, or wasn’t able to make time.
These kinds of discussions take a while because the family’s understanding of the patient’s illness must be sussed out, and their fears, worries and angers must be aired and addressed. “Comfort care” has to be explained in the context of a failing human body. That difficult, time-consuming emotional work can be avoided by simply sending patients to I.C.U. or to another hospital.
Some physicians also believe that they should have the final say about their patients’ care, especially when a patient’s health is failing. Each case is unique, and a physician’s input is invaluable. But doctors are also generally acknowledged to be unrealistically positive prognosticators. The hard truth is that every single one of us will one day reach a point where our irreparable vulnerability, and decline, cannot be denied or reversed.
As technology advances, will it continue to blur the lines between public and private? Explore what’s at stake and what you can do about it.
It helps to look at this question through the lens of medical ethics. In general, the many treatment possibilities available via modern health care are viewed as actively good, or as medical ethicists would say, beneficent. Honoring patients’ autonomy at the end of their lives is also seen as beneficent. In clinical practice, when these competing goods conflict, the treatment decisions that get made tend to be, as I have described, random and disordered.
The guidelines I propose for comfort care introduce a third term into the discussion: maleficence. Pursuing curative care that is pointless creates harm for patients and staff, who, like the frustrated I.C.U. nurse taking over my octogenarian patient, experience moral distress in these situations and a feeling of professional uselessness.
Such guidelines would introduce clarity into end-of-life decisions while still respecting patients’ autonomy. An end-of-life guideline might automatically call a palliative care clinician to the bedside to help patients and family members understand the choices available to them. The guidelines would empower nurses to advocate for comfort care, irrespective of physicians who view aggressive treatment as always being in the patient’s best interest.
For patients who choose full resuscitation and treatment despite being very ill and fragile, a guideline would ensure that they learned about comfort care. But they would never overrule a patient’s wishes for curative treatment.
The day after my octogenarian patient’s transfer to the I.C.U. he returned to our floor, back on comfort measures. I was told that the patient’s oncologist took his family physician aside and, in a scene worthy of a medical TV show, yelled at him.
The family doctor had skipped over the leukemia diagnosis, had reacted to his patient being essentially put on hospice for pneumonia, and either out of sympathy or hubris, had rushed over to the hospital to save him. But he couldn’t be saved, and we all knew that. He died a few days later.
Our society makes admissions of medical futility in the face of human frailty harder by equating “cure” with “fighting back” and “comfort” with “giving up.” A set of guidelines won’t change that. But it would help nurses and doctors acknowledge when cure is impossible, and comfort is the most compassionate, ethical route.
It may soon be legal for the dead to push daisies, or any other flower, in backyard gardens across Washington state. The state legislature recently passed a bill that, if signed by the governor, allows human bodies to be composted — and used for mulch.
As the nation ages, U.S. funeral practices are changing. Rates of cremation surpassed 50 percent in 2016, overtaking burials as the most popular choice. The Census Bureau, in a 2017 report, predicted a death boom: 1 million more Americans are projected to die in 2037 than they did in 2015. Human composting, its supporters say, is an eco-friendly option that can meet this growing demand. A Seattle-based company called Recompose plans to offer a service called “natural organic reduction” (it has two patents pending) that uses microbes to transform the departed — skin, bones and all.
“We have this one universal human experience, of death, and technology has not changed what we do in any meaningful way,” said state Sen. Jamie Pedersen (D), who introduced the bill, which passed with bipartisan support on April 19. “There are significant environmental problems” with burying and burning bodies, he said.
Joshua Trey Barnett, an expert on ecological communication at the University of Minnesota at Duluth, listed the flaws in conventional burials: “We embalm bodies with toxic solutions, bury them in expensive caskets made of precious woods and metals and then indefinitely commit them to a plot of land.” Though incineration has a smaller ecological footprint, estimates suggest the average cremated body emits roughly 40 pounds of carbon and requires nearly 30 gallons of fuel to burn.
The bill awaits Gov. Jay Inslee (D), who placed climate change at the center of the presidential bid he announced in March. “The bill passed the legislature with bipartisan support and appears to be eco-friendly,” said Tara Lee, a spokeswoman in Inslee’s office. Inslee has 20 days to review the bill, which arrived on his desk Thursday. “He has not stated how he will act on this,” Lee said.
Burial practices are largely matters of state, not federal, law. The bill, which would take effect on May 1, 2020, also would legalize alkaline hydrolysis. That method turns bodies to liquid using a base such as lye. In the past decade, more than a dozen states have approved it.
Pedersen said he would be “shocked, frankly,” if the governor did not sign the bill into law.
Recompose founder Katrina Spade met Pedersen in a Seattle coffee shop last year and pitched the idea of legalizing human composting. The company’s system, she said, is a souped-up version of natural microbial decomposition. “It is actually the same process happening on the forest floor as leaf litter, chipmunks and tree branches decompose and turn into topsoil,” Spade said
The company’s service, which would include a funeral ceremony, will cost about $5,500, she said (more than the average cremation but less than burial in a casket). Microbes go to work within a large vessel, about eight feet tall and four feet wide, that fits a single body along with alfalfa, straw and wood chips. Over the course of 30 days, as temperatures in the vessel rise to 150 degrees, decomposition destroys the body, along with most pathogens and pharmaceuticals, Spade said.
Pacemakers would be removed beforehand; artificial joints or other implants sifted out afterward. “We’re making about a cubic yard of soil per person,” Spade said. Families would be allowed to take the compost home, or, because it’s a lot of soil, donate it to conservation groups in the Puget Sound region. Restrictions on where the soil could be applied would mirror rules for scattering ashes — broadly speaking, only on land with an owner’s permission.
The decomposition technique “is now a fairly common procedure” used to dispose of livestock carcasses, said Lynne Carpenter-Boggs, a soil scientist at Washington State University and an adviser to Recompose. During an outbreak of avian flu, Carpenter-Boggs helped farmers implement a similar method to destroy potentially infected poultry.
Carpenter-Boggs recently oversaw a pilot study in which Recompose composted six donated cadavers. The results are still unpublished, but Recompose claimed in a news release the soil met safety thresholds set by the state’s ecology department.
“The material we had, at the end, was really lovely,” Carpenter-Boggs said. “I’d be happy to have it in my yard.”
Barnett said the media often inflates the “ick factor” of human composting. “Very few people I talk with have this response,” he said. He added: “If most folks knew the ins and outs of embalming, I suspect they would find it much ickier in fact than composting
Spade said she has been deluged by emails from those who want to be composted, with particularly enthusiastic correspondents from California, Colorado and Vermont, and overseas from Brazil, the Netherlands and Australia.
“I have a few friends at some of the assisted-living facilities here in Seattle,” Spade said, “and these folks are in their mid-80s saying: ‘Look, we want these options. … We care about the last gesture we leave on this earth.’ ”
I am a gynecologic oncologist and I’m boarded in palliative care. As a result of my training and 20+ years of clinical experience, I feel strongly about caring for the whole patient throughout the clinical course: spiritually, emotionally, and physically. In those 20+ years, I have experienced the end of life with many patients and families. Although everyone handles it differently, I’ve observed some common themes. It is difficult to stop treatment, to accept the inevitable with dignity, to die “well”—not just for the patient and her family, but for her providers as well.
This past Christmas, I experienced the death of a loved one both as a family member and a health care provider, acting in the stead of the health care providers who were absent at the end of life. The experience of my father in law’s passing brought home to me that inappropriate aggressive measures at the end of life are not limited to patients with cancer, but affect us all.
I met my husband when we were freshmen in college, and we spent a lot of time at his father’s home together. My husband has a big Catholic family who are all rabid Eagles fans; I am a Jewish liberal girl raised on the Boston teams. They accepted me unconditionally. I shared Sunday dinner with his family, brought my laundry over, watched movies on his dad’s TV. When my husband and I were married in a Jewish ceremony in Boston, everyone in his family came to the wedding and thoroughly enjoyed the ceremony and dancing the hora at the reception.
My husband’s family, and particularly his father, were an important part of both of our lives. My father-in-law, Ron, was a philosophy professor and a brilliant man who loved to argue (he would say debate) with his children. While he and I disagreed about many things, I never felt judged by him, or by anyone else in the family.
In the last few years, I could tell that Ron was sick, but he was private about the details and I didn’t pry. I did know that he had multiple stents placed in his cardiac vessels. This past year, though, there had been a significant deterioration in his condition. He had to stop golfing due to fatigue, and he was in and out of the hospital with shortness of breath and chest pain.
In December, I visited the community hospital where Ron was receiving care; his third prolonged admission in as many weeks. I found him sitting in a chair wrapped in a heavy blanket in an overheated room. He had lost a lot of weight and looked frail. He had to lean forward to breathe. A few weeks before my visit, he had undergone another cardiac catheterization (there was nothing more to stent) and a renal artery catheterization that showed bilateral significant occlusion.
Ron told me he expected to get better and get back to the golf course. I told him I wished for him to get well enough to go home and stay out of the hospital.
I had spoken to his wife on the telephone before the renal artery catheterization. I talked with her about requesting a palliative care consult as Ron was clearly suffering. We discussed the hard questions I was hoping would be addressed. I don’t know if she asked these questions. I do know that the doctors convinced her that the renal artery catheterization might help him. I know that they didn’t offer a palliative care consultation and I know that they didn’t tell my in-laws that Ron would not get better—that his current state was the best they could hope for.
On Christmas morning, my husband and I received a panicked call from Ron’s wife. When we arrived, he was clearly in distress. An episode of melena (that apparently wasn’t new) needed to be managed urgently. I spoke to his primary physician on the phone, who suggested we bring him to the ED. I asked him if the ED was the best decision; wouldn’t hospice be a better option? Yes, he said, it would. In fact, he said he had been thinking about this for the past two months. This revelation shocked me. Why, I asked him, had he not said anything to the family? Why was he continuing to recommend and pursue aggressive care in this 81-year-old man who was clearly declining? There was no good answer to this question.
And so it fell to me to tell Ron’s wife that he wasn’t going to get better, and that she had to make a choice: take him to the ED, where he was likely to be admitted to the hospital for another prolonged—and futile—stay, or keep him at home and call hospice. I will admit that I supported avoiding the hospital, and for better or worse, I influenced that decision.
I talked to Ron that morning during the intermittent periods that he was awake. He asked me how I knew he was dying. (A good question, but I just knew, an instinct honed over two decades of caring for patients with cancer.) He seemed genuinely surprised to hear that his condition would not improve. He told me he wasn’t ready to die, he had a lot of things left to do. (I asked him to make a list, but he couldn’t stay awake long enough to accomplish this task.) He said he was afraid. He had only that one morning to process impending death, and he never really got to say all of his goodbyes.
Ron died early that afternoon. I was with him. His death was peaceful. He was in his own home, surrounded by his (completely oblivious) grandchildren. It was what we call in medicine a “good death.”
But his family was angry. They weren’t prepared, they hadn’t known, they didn’t realize it would happen so fast. For the most part, they had all believed that he would get better. More than half of them didn’t make it to the house to say goodbye before he died.
I was angry, too. I was furious at Ron’s care providers that day. They never communicated clearly with him or his wife that he was dying, that his chances of getting better were slim. They didn’t discuss quality of life or goals of care. They offered aggressive procedures that were potentially life shortening and unlikely to be helpful, and the family didn’t feel empowered to decline. Their approach was the opposite of everything I believe in as a palliative specialist, an oncologist, a fellow human being.
Unfortunately, this type of aggressive care at the end of life happens often. We live in “a very peculiar, death denying society.”1 As providers, we spend far too much money on procedures at the end of life (chemotherapy, ICU, catheterizations) that are unlikely to benefit our patients, and in fact are likely to decrease quality of life and hasten death.
Why do we do this? Are we afraid to tell patients the truth? Are we reluctant to admit to ourselves that sometimes medicine has nothing more to offer and that death is unavoidable (for all of us)? Maybe it feels too much like failing to say that there’s nothing more we can do, even when there are other options (such as palliative care and/or hospice) that are far preferable to aggressive medical procedures and prolonged hospital stays.
A few weeks after Ron died, his wife called me. She wanted to talk about the decision we made to keep him home. She wanted to know if this was the right choice: if she had taken him to the hospital that day, would things have been different?
I told her honestly that yes, things would have been different—they would have been horribly worse. Ron would not have lived longer, and he certainly wouldn’t have died at home, in his bedroom, in his recliner, surrounded by his family. We could have painfully prolonged the dying process, by a few hours or a few days at most, but we could not have stopped it. She had made the right decision.
Here is the fact that we cannot avoid: We are all going to die. Whether we cheer for the Eagles or the Patriots, whether we are philosophy professors or medical professionals (yes, even us). I believe it is fair to say that most of us want to die that “good death,” surrounded by our family and friends, not attached to machines in a sterile hospital environment.
As providers, we must take that extra step to be honest with our patients and prepare them for the truth. To do less—to gloss over the inevitable end of life and deny them the opportunity for a good death—is to do our patients a profound disservice. For myself and for my family, I hope that our own health care providers will be honest with us about what medicine can and cannot accomplish in improving all aspects of health.
My pain at losing Ron is mitigated in a small way by knowing that I helped to spare him from discomfort and loss of dignity in the final hours of his life. I am so glad that, as a palliative care provider and cancer physician, I had the training and experience to do this small thing for the man who welcomed me so wholeheartedly into his family.
Cruel to be kind: animal hospice gives pets better way to die
To help pet owners make decisions about end-of-life care, Villalobos developed a decision tool based on seven indicators. The scale is often called the HHHHHMM scale.
By Tara Parker-Pope
Nearly 14 years ago, my daughter and I were grieving the death of my mother, and it seemed nothing could lift our spirits. Then we got Fluffy, a bouncing bundle of gray and white puppy, and everything changed.
Fluffy kept us busy with pee pads and squeaky toys. She made us laugh in spite of our sadness, and the gray clouds of grief began to recede
Over the years, our 10lb fluff ball was a constant in our lives. We dressed her up in holiday sweaters, celebrated her birthdays and scolded her for sneaking food from the cat’s dish. But in recent weeks, as our walks slowed down and her naps grew longer, it became clear that our time together was limited. I hoped that in the end, Fluffy would have a natural death, drifting off to sleep for good on her favorite pillow
A natural death is what many of us hope for with our pets. They are members of our family, deeply enmeshed in our lives, and for many of us, thoughts of euthanasia seem unfathomable, so we cling to the notion that a natural death is desirable.
In most cases, a natural death, she said, means prolonged suffering
But my veterinarian said that my end-of-life scenario for my dog wasn’t realistic. In most cases, a natural death, she said, means prolonged suffering that we don’t always see, because dogs and cats are far more stoic than humans when it comes to pain.
Dr Alice Villalobos, an oncology veterinarian in California, said that many pet owners idealise a natural death without thinking about what a “natural” death really means. A frail animal, she noted, doesn’t linger very long in nature. “When animals were domesticated, they gave up that freedom to go under a bush and wait to die,” Villalobos said. “They become very quickly part of mother nature’s plan due to predators or the elements. And yet in our homes we protect them from everything so they can live a long time – and sometimes too long.”
I had reached out to two at-home vet services that both offered compassionate guidance and confirmed my fears that no treatments were available to improve her condition
Villalobos has dedicated her career to helping pet owners navigate end-of-life issues. She created an animal hospice program she calls “pawspice.” She coined the name because she doesn’t want to confuse end-of-life care for animals with the choices we make for human hospice.
Her program is focused on extending a pet’s quality of life. That might mean treating a cancer “in kind and gentle ways,” she said. It can mean supportive care like giving fluids, oxygen or pain medication. In some cases, it might mean hand-feeding for frail pets or carrying an animal to a water dish or litter box. And finally, she said, it means a “well death.”
Villalobos has advocated what she calls “bond-centered euthanasia,” which allows the pet owner to be present and play a comforting role during the procedure. She has also championed sedation-first euthanasia, putting the animal into a gentle sleep before administering a lethal drug.
To help pet owners make decisions about end-of-life care, Villalobos developed a decision tool based on seven indicators. The scale is often called the HHHHHMM scale, based on the first letter of each indicator. On a scale of zero to 10, with zero being very poor and 10 being best, a pet owner is asked to rate the following:
HURT Is the pet’s pain successfully managed? Is it breathing with ease or distress? HUNGER Is the pet eating enough? Does hand-feeding help? HYDRATION Is the patient dehydrated? HYGIENE Is the pet able to stay clean? Is it suffering from bed sores? HAPPINESS Does the pet express joy and interest? MOBILITY Can the patient get up without assistance? Is it stumbling? MORE Does your pet have more good days than bad? Is a healthy human-animal bond still possible?
Villalobos said pet owners should talk to their vet about the ways they can improve a pet’s life in each category. When pet owners approach end of life this way, they are often surprised at how much they can do to improve a pet’s quality of life, she said.
By revisiting the scale frequently, pet owners can better assess the quality of the pet’s hospice care and gauge an animal’s decline. The goal should be to keep the total at 35 or higher. And as the numbers begin to decline below 35, the scale can be used to help a pet owner make a final decision about euthanasia.
“Natural death, as much as many people wish it would happen, may not be kind and may not be easy and may not be peaceful,” Villalobos said. “Most people would prefer to assure a peaceful passing. You’re just helping the pet separate from the pack just as he would have done in nature.”
