As summer winds down, it’s time to look again at that to do list, especially an item that most of us have put off for years, doing our Advance Care Plan. Fortunately there’s a way to face that task with others, making it easier.
Our “Kitchen Table Conversations About Advance Care Planning” workshop poses the questions that need to be addressed in a facilitated setting which encourages sharing. With stories, role playing and a panel of health care professionals who help people at the end of life, one participant described the workshop as “most impactful and educational for me.”
Our aim is to prepare participants for the most important part of advance care planning, the conversation with loved ones. As one person said, “My husband and I have differing wishes regarding end of life care, so the exercises were pretty revealing.” It’s easy to see the benefit of understanding those differences before a crisis develops, and before dementia sets in. Another participant who experienced the long journey of dementia with his wife said, “Once mid- to late-stage dementia develops, the individual will no longer be competent to make any decisions. It is essential to clearly identify your decision makers in both health care and financial matters.”
In the workshop we spend time looking at whom you might choose as your advocate or health care power of attorney. What are they expected to do? Who would be best able to ask the tough questions, such as will the person recover and what is the expected quality of life? Your advocate should have a good understanding of what you would say
Medicine has made significant progress in developing tools that lengthen life. Diseases that have been considered terminal can now be managed as chronic illnesses, like diabetes and heart disease. This has resulted in a movement toward shared decision making, with the doctor providing realistic side effects and outcomes, and the patient sharing his or her personal values and goals. Together they decide what treatment is appropriate for the individual.
One tool that we all have become familiar with through medical TV shows is CPR. In a typical TV depiction, the actor/patient survives. In reality, between eight and 18 percent of patients who’ve had CPR actually leave the hospital alive, and many sustain physical trauma like broken ribs. Whether a person survives depends on the age and health of the patient.
In our workshop we introduce people to the POLST, the Provider Orders for Life Sustaining Treatment, a document prepared by your health care provider that says whether you want such a procedure performed on you. Especially anyone who is frail or has a terminal diagnosis should consider having a conversation with their doctor about a POLST. With the POLST form posted on your refrigerator, emergency services will not use CPR or other procedures that you have declined.
Shared medical decision making is taken to another level with a new and growing specialty, pal-liative care. The palliative care specialist can be involved at any stage of life to focus on managing side effects of treatment and improving quality of life. This can be particularly helpful as chronic illnesses become more burdensome. Palliative care, sometimes called comfort care, focuses on dignity and quality of the remaining life, and requires ongoing management and conversation.
Hospice is also an important consideration when planning for life’s end. Hospice uses a team of doctors, nurses, social workers, aides, clergy and trained volunteers to augment the care you receive at home. The focus is on comfort and assuring the highest quality of life for an individual nearing life’s end. Treatments and testing that cause discomfort are suspended. Surprisingly, research is showing that many patients who choose comfort care earlier in their illness actually live longer with a higher quality of life.
You’ll learn more at the workshop, and gain the confidence and skills to begin having those “kitchen table conversations” of your own with loved ones. Imagine the relief and peace of mind you’ll feel to share your wishes! We hope you’ll join us at upcoming workshops this fall – you can get details at kitchentableconversations.eventbrite.com or by calling Missoula Aging Services at 728-7682.
The author’s father, John T. Harrington, with one of his great-grandchildren, Libby M. Myers.
By Samuel Harrington
When my father was 88 and the picture of health for his age, he taught me, an experienced physician, an unexpected lesson.
We were discussing treatment options promoted by his primary-care physician and other doctors for an aortic aneurysm — a ballooned segment of blood vessel at risk for dangerous rupture in his abdomen. He turned to me and asked, “Why would I want to fix something that is going to carry me away the way I want to go?”
My father had the generally accurate impression that if his aneurysm ruptured, he could demand pain medicine, decline emergency surgery and be dead from internal bleeding within a few hours or, at most, a day or two.
With his unexpected question, he directly challenged the assumption that a doctor’s advice is always in a patient’s best interest, particularly regarding a medical problem late in life. This proposition had been my general belief, but after more than two decades as an internist and gastroenterologist, he had prompted me to reconsider it.
Furthermore, Dad was making an important distinction, between care at the end of life (in this case, palliative care for pain) and treatment (aneurysm repair). He was also suggesting a natural exit strategy. Not suicide, to which he had a moral objection, and not physician-assisted suicide, which was not a legal option in his home state of Wisconsin.
Despite his generally decent health, we both thought that he was too old for a major surgical repair, so I suggested he undergo an outpatient procedure to insert a stent to prevent the ballooning artery from worsening — that would at least postpone the threat of rupture. My reasoning was that with the stent, he was likely to enjoy the birth of his first great-grandchild and that without it, he would probably never know her.
My father lived five more years and met 12 great-grandchildren. Three of those years were good ones, but two of them were not.
I have asked myself, “Was it worth it?” I know that he asked himself that, too. His mantra for the last two years of his life was “I have lived too long.”
The 2003 book “Tyranny of Treatment” documented the terrible medical procedures used in 18th-century England: draining blood from swollen legs and testicles, radical mastectomy without anesthesia; bleeding arms to “cure” eye problems.
Painful, futile treatment continues to this day, particularly with elderly patients who often are not informed of the difference between palliative care, designed to minimize pain while trying to preserve quality of life at the end, and aggressive treatment more designed to prolong life at any cost, using such methods as surgery or chemotherapy. Often they are not informed about the benefits of letting some conditions run their course.
Here in America, there is a deeply held belief that advances in medicine will eventually conquer or cure the chronic scourges of cancer, dementia, heart disease, lung disease and diabetes. This notion leads many elderly patients to seek aggressive treatment not only to spare their loved ones grief but because they hope (and expect) to be cured, if only they hold on just a little longer.
This is one reason that every year more than 75,000 people older than 85 die in intensive care units seeking care that proves to be futile, according to a 2004 study, and why more than 65 percent of our senior citizens die in institutions when a significant majority say they would prefer to die at home, according to a 2014 report by the Institute of Medicine.
The impulse to treat often prompts us to forget that many elderly patients have multiple medical problems brought on by chronic organ system weaknesses. Focusing aggressive therapy on one serious diagnosis can complicate another to the point of death, disability or prolonged hospitalization. Beyond that, too many doctors succumb to research from drug and device makers that show incrementally positive results for therapies that mean little to someone at the end of a long life.
As an example, a friend recently told me about her 89-year-old mother’s consultation with an oncologist for a Stage 4 cancer of the pancreas. The doctor launched into a description of some new treatment options.
After listening carefully to what the doctor offered, the patient posed the question, “How long can I expect to live if I decline chemotherapy, and how much longer can I expect to live if I undertake therapy?” When the doctor responded that the answer to both questions was three to six months, she cut short the consultation.
According to the science behind the studies, three months of added life expectancy is considered a statistically significant improvement. But for many people at an advanced age, three months of added “life” in hospitals or nursing homes, possibly suffering side effects, may not be an appealing prospect. My friend’s mother looked at the statistics and saw no practical benefit.
Facing the tyranny of treatment is not usually so dramatic. Not every patient has the option to decline surgery for a threatening aneurysm or chemotherapy for late-stage cancer. Most patients have multiple smaller decisions to make in the mission creep of treatment vs. care. These patients and their families need help thinking about the natural progression of aging and visualizing what they want at the end. Then, if they decline treatment and choose palliative care, they can consider an exit strategy.
One patient I spoke with was living a bed-to-chair existence and suffering urinary incontinence from multiple mini-strokes. She resisted the initial insertion of a bladder catheter as one indignity too far. The thought of an invasion of body, followed by regular catheter exchanges, brought a ripple of sadness to her eyes.
She brightened, however, when I explained that refusing to exchange the catheter would ultimately create a painless urinary-tract infection. If she chose, she could then decline antibiotics, and with the help of palliative medications would be able to die comparatively comfortably of a progressive systemic infection. She now had an exit strategy.
If asked by patients, most doctors are willing to discuss quality of life at the expense of quantity of life. In elder care, that conversation should include a discussion about futile treatments vs. making sure the last days on earth are comfortable. As Sherwin Nuland wrote in “How We Die,” “The real event taking place at the end of our life is our death, not the attempts to prevent it.”
Therefore, discussions with our trusted physicians should evolve from how to die later to how to die better, including with an exit strategy.
In my father’s case, he was clear at the end that he wanted to avoid further interventions designed to prolong life. At age 93, after six months in hospice, medicated for comfort, he died quietly at home.
FOR a parent whose child is facing death, the future looks bleak. But at the world’s first children’s hospice, staff ensure that life is celebrated, as our writer reports.
At the end of the main corridor in Helen House, the world’s first children’s hospice, lies the Little Room. It’s smaller than the other eight bedrooms, simply furnished, and it’s the place parents dread.That’s because it’s where they come when their child has died: the room is kept cold to preserve the body and give the family time to say their goodbyes and give their last hugs. Of course, there are tears here but also laughter and smiles: the room has been decorated as a fairy castle and a spaceship over the years. One time, on a boiling hot day, a grieving family took a break for a water fight on the grass outside.
“We could hear squeals from the parents and siblings of the child who had died,” recalls Clare Periton, chief executive of the hospice in Oxford. “It’s moments like those that capture what we’re about here. Death happens, but the living goes on, there’s still room for fun, and no one judges you.“Parents who come here with their children are scared by the Little Room, but afterwards say it made all the difference to be able to have time with them to say their goodbyes and come to terms with the fact that their child is cold.”
The normalising of death as part of life is what makes hospices so special
We can’t see the room today because it’s being used, but we visit the Starfish Room, the equivalent in Douglas House, the sister hospice for 16 to 35 year olds next door. The room is at the centre of the seven-bedroom building. There’s a discreet door at the back that leads directly outside via a long corridor.It was designed for coffins to enter and leave by – but no one can ever remember it being used. “The young people tell us they came in through the front door and they will go out of the front,” says Clare. This normalising of death as part of life is what makes hospices so special.On the bed in the Starfish Room is a lovingly hand-stitched quilt featuring a parable that explains the room’s name. A man spends his days rescuing beached starfishes by throwing them back into the sea. “What possible difference are you making?” someone asks. “There are so many stranded starfish.”“It makes a difference to this one,” the man replies, holding up a single starfish.“It’s a philosophy to live by,” says Clare. “You can’t change the world completely but you can make a difference to your bit. This is what we are trying to do here.”
Helen House was the world’s first children’s hospice when it opened in 1982. It was the result of a friendship between a nun, Sister Frances Dominica, and the parents of a terminally ill two year old, Helen Worswick, desperate for respite care. It was built in the grounds of the convent; Douglas House was added in 2004.
‘You can’t change the world completely but you can make a difference to your bit’
It should be a subdued place because what could be more upsetting than a child’s death? But there’s a bustling, playful atmosphere. “It’s full of laughter and smiles. Staff aren’t moping about, there’s none of that tilted head earnest sympathy,” laughs Clare, who took over six months ago but has worked at the hospice for 11 years having trained as a nurse.“Children need to play and have fun, no matter what is going on in their lives.”There’s a huge, airy playroom at the heart of the modern building. There’s a teacher on site, a games room, a hot-tub room (where parents can take a well-deserved break), music room, sensory room and two family flats. There are 250 children on the books at any one time: some come here for end-of-life care in the last few weeks, others with life-limiting conditions come for respite care a few times a year to give their parents a break.Staff go to incredible lengths to make children’s last days happy and memorable: one 21 year old with cystic fibrosis was desperate to see the new Paddington film before he died, but the DVD hadn’t yet been released.Someone managed to get hold of a copy, it was couriered up from the company in London and a red carpet duly hired for the full premiere experience. Just yesterday, a six-year-old girl got her dearest wish: a trip round Oxford in a horse and cart.
As well as what Clare calls the “sparkly” experiences, they organise ordinary trips to the pub or to Costa Coffee for very ill or disabled young adults who want a slice of normal life.
‘We know more than anyone how your whole life can change in a split second’
At the moment there are four children in Helen House, plus one in the Little Room, and another three children waiting for end-of-life care, being visited at home by outreach nurses.There are 160 staff, ranging from doctors to cleaners and fundraisers, a teacher, music therapist, aromatherapist, play specialists and an army of volunteers. It costs £5.1 million a year to run both houses; Government funding makes up 12 per cent, but the rest is fundraising: £1 million comes in from 37 charity shops.Fundraising was challenging last year, possibly due in part to the negative publicity surrounding their founder, Sister Frances Dominica, who faced historic sexual-abuse allegations. She was under investigation but the CPS dropped the case. She denies the allegations, but had to resign from her role as a trustee of the hospice last December.All 54 children’s hospices in the UK have a similar struggle for funding: on average they receive only 21 per cent of their costs from local Government and health commissioners; the rest comes from fundraising. Many hoped David Cameron would introduce more central Government support, as his late son Ivan was cared for at Helen House and he has spoken fondly of the care the family received there. But nothing has happened as yet.
Perhaps it’s because as a society we don’t like to talk about children dying – unlike in past generations where child mortality was common.
“My great grandmother had 16 pregnancies,” says Clare. “They were used to child mortality. But now it’s a subject we don’t like to discuss.”
We adults may have lost this matter-of-fact attitude to death, but young children haven’t. “We’ve heard siblings talking in the playroom. One will say, ‘My sister has died,’ and the other will say, ‘Oh, my brother died,’ and they will debate ‘which one is the deadest’ or who died first,” says Clare. Her own daughters, aged eight and 10, recently had a discussion about how you would find a coffin for a tall man. “You could fold him in half,” suggested one.
Staff find that children at the hospice often know they are going to die, even if adults have not told them. Outreach nurse Shirley Jones recalls a boy of five who was nearing the end of life, but his parents were convinced he didn’t know.
One day he said he wanted everyone to go up to his bedroom and give presents to his brother, whose birthday was in a couple of months. They were puzzled but did it. He died later that day. “Whether they have knowledge or whether they are picking up on cues from family – sensing anxiety, we don’t know,” says Shirley.
Children are often accepting of death (rarely do nurses hear gravely ill children ask, “Why me?”), but teens and young adults are often angry, perhaps because they have more comprehension of what they are going to miss.
When it comes to end-of-life, children often know what they want. One seven-year-old boy who knew he was going to die was determined only to allow staff to give him limited help when the time came. He even had his wishes laminated to the equipment next to his bed.
When the time came, they abided by his wishes, even though his parents must have wanted to try anything to prolong his life. “His mum was incredibly gracious. She was so terribly upset but she did not ask us to carry on. I had so much admiration for her,” recalls Clare.
When a child dies, the impact on parents is all-consuming; bereavement teams at the hospice are often in touch with them years afterwards. “When a child dies, parents have lost the future,” says Clare. “We help them find a new normal, because it’s never the same again.”
By rights, her work should be gruelling and sad, but she loves it. “I’ve only had three bad days in 11 years here – and only one of them was to do with a death. Working here makes me treasure time with my own children. It makes me listen to them, hug them and spend as much time as possible with them. We know more than anyone how your whole life can change in a split second.”
‘Contrary to popular fears, patients attest that awareness of dying does not lead to greater sadness, anxiety or depression.’
Our consultation is nearly finished when my patient leans forward, and says, “So, doctor, in all this time, no one has explained this. Exactly how will I die?” He is in his 80s, with a head of snowy hair and a face lined with experience. He has declined a second round of chemotherapy and elected to have palliative care. Still, an academic at heart, he is curious about the human body and likes good explanations.
“What have you heard?” I ask. “Oh, the usual scary stories,” he responds lightly; but the anxiety on his face is unmistakable and I feel suddenly protective of him.
“Would you like to discuss this today?” I ask gently, wondering if he might want his wife there.
“As you can see I’m dying to know,” he says, pleased at his own joke.
If you are a cancer patient, or care for someone with the illness, this is something you might have thought about. “How do people die from cancer?” is one of the most common questions asked of Google. Yet, it’s surprisingly rare for patients to ask it of their oncologist. As someone who has lost many patients and taken part in numerous conversations about death and dying, I will do my best to explain this, but first a little context might help.
Some people are clearly afraid of what might be revealed if they ask the question. Others want to know but are dissuaded by their loved ones. “When you mention dying, you stop fighting,” one woman admonished her husband. The case of a young patient is seared in my mind. Days before her death, she pleaded with me to tell the truth because she was slowly becoming confused and her religious family had kept her in the dark. “I’m afraid you’re dying,” I began, as I held her hand. But just then, her husband marched in and having heard the exchange, was furious that I’d extinguish her hope at a critical time. As she apologised with her eyes, he shouted at me and sent me out of the room, then forcibly took her home.
It’s no wonder that there is reluctance on the part of patients and doctors to discuss prognosis but there is evidence that truthful, sensitive communication and where needed, a discussion about mortality, enables patients to take charge of their healthcare decisions, plan their affairs and steer away from unnecessarily aggressive therapies. Contrary to popular fears, patients attest that awareness of dying does not lead to greater sadness, anxiety or depression. It also does not hasten death. There is evidence that in the aftermath of death, bereaved family members report less anxiety and depression if they were included in conversations about dying. By and large, honesty does seem the best policy.
Studies worryingly show that a majority of patients are unaware of a terminal prognosis, either because they have not been told or because they have misunderstood the information. Somewhat disappointingly, oncologists who communicate honestly about a poor prognosis may be less well liked by their patient. But when we gloss over prognosis, it’s understandably even more difficult to tread close to the issue of just how one might die.
Thanks to advances in medicine, many cancer patients don’t die and the figures keep improving. Two thirds of patients diagnosed with cancer in the rich world today will survive five years and those who reach the five-year mark will improve their odds for the next five, and so on. But cancer is really many different diseases that behave in very different ways. Some cancers, such as colon cancer, when detected early, are curable. Early breast cancer is highly curable but can recur decades later. Metastatic prostate cancer, kidney cancer and melanoma, which until recently had dismal treatment options, are now being tackled with increasingly promising therapies that are yielding unprecedented survival times.
But the sobering truth is that advanced cancer is incurable and although modern treatments can control symptoms and prolong survival, they cannot prolong life indefinitely. This is why I think it’s important for anyone who wants to know, how cancer patients actually die.
Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’
“Failure to thrive” is a broad term for a number of developments in end-stage cancer that basically lead to someone slowing down in a stepwise deterioration until death. Cancer is caused by an uninhibited growth of previously normal cells that expertly evade the body’s usual defences to spread, or metastasise, to other parts. When cancer affects a vital organ, its function is impaired and the impairment can result in death. The liver and kidneys eliminate toxins and maintain normal physiology – they’re normally organs of great reserve so when they fail, death is imminent.
Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food, leading to progressive weight loss and hence, profound weakness. Dehydration is not uncommon, due to distaste for fluids or an inability to swallow. The lack of nutrition, hydration and activity causes rapid loss of muscle mass and weakness. Metastases to the lung are common and can cause distressing shortness of breath – it’s important to understand that the lungs (or other organs) don’t stop working altogether, but performing under great stress exhausts them. It’s like constantly pushing uphill against a heavy weight.
Cancer patients can also die from uncontrolled infection that overwhelms the body’s usual resources. Having cancer impairs immunity and recent chemotherapy compounds the problem by suppressing the bone marrow. The bone marrow can be considered the factory where blood cells are produced – its function may be impaired by chemotherapy or infiltration by cancer cells.Death can occur due to a severe infection. Pre-existing liver impairment or kidney failure due to dehydration can make antibiotic choice difficult, too.
You may notice that patients with cancer involving their brain look particularly unwell. Most cancers in the brain come from elsewhere, such as the breast, lung and kidney. Brain metastases exert their influence in a few ways – by causing seizures, paralysis, bleeding or behavioural disturbance. Patients affected by brain metastases can become fatigued and uninterested and rapidly grow frail. Swelling in the brain can lead to progressive loss of consciousness and death.
In some cancers, such as that of the prostate, breast and lung, bone metastases or biochemical changes can give rise to dangerously high levels of calcium, which causes reduced consciousness and renal failure, leading to death.
Uncontrolled bleeding, cardiac arrest or respiratory failure due to a large blood clot happen – but contrary to popular belief, sudden and catastrophic death in cancer is rare. And of course, even patients with advanced cancer can succumb to a heart attack or stroke, common non-cancer causes of mortality in the general community.
You may have heard of the so-called “double effect” of giving strong medications such as morphine for cancer pain, fearing that the escalation of the drug levels hastens death. But experts say that opioids are vital to relieving suffering and that they typically don’t shorten an already limited life.
It’s important to appreciate that death can happen in a few ways, so I wanted to touch on the important topic of what healthcare professionals can do to ease the process of dying.
In places where good palliative care is embedded, its value cannot be overestimated. Palliative care teams provide expert assistance with the management of physical symptoms and psychological distress. They can address thorny questions, counsel anxious family members, and help patients record a legacy, in written or digital form. They normalise grief and help bring perspective at a challenging time.
People who are new to palliative care are commonly apprehensive that they will miss out on effective cancer management but there is very good evidence that palliative care improves psychological wellbeing, quality of life, and in some cases, life expectancy. Palliative care is a relative newcomer to medicine, so you may find yourself living in an area where a formal service doesn’t exist, but there may be local doctors and allied health workers trained in aspects of providing it, so do be sure to ask around.
Finally, a word about how to ask your oncologist about prognosis and in turn, how you will die. What you should know is that in many places, training in this delicate area of communication is woefully inadequate and your doctor may feel uncomfortable discussing the subject. But this should not prevent any doctor from trying – or at least referring you to someone who can help.
Accurate prognostication is difficult, but you should expect an estimation in terms of weeks, months, or years. When it comes to asking the most difficult questions, don’t expect the oncologist to read between the lines. It’s your life and your death: you are entitled to an honest opinion, ongoing conversation and compassionate care which, by the way, can come from any number of people including nurses, social workers, family doctors, chaplains and, of course, those who are close to you.
Over 2,000 years ago, the Greek philosopher Epicurus observed that the art of living well and the art of dying well were one. More recently, Oliver Sacks reminded us of this tenet as he was dying from metastatic melanoma. If die we must, it’s worth reminding ourselves of the part we can play in ensuring a death that is peaceful.
No one wants to talk about death. But when a loved one is faced with old age or a serious illness, there are choices that need to be made. How does the patient feel about life-sustaining measures in the face of terminal illness? Does he or she have strong feelings about mechanical breathing, CPR or chemotherapy? What factors will be most important to the dying person — physical comfort, no pain, treatment costs?
As an emergency medicine doctor, Laura Vearrier, MD, a clinical assistant professor at Drexel University College of Medicine, sees plenty of family members having to make these decisions for sometimes impaired or incapacitated patients. Stress is high. Emotions are involved. What’s worse, there isn’t time for physicians to sit down and properly explain medical procedures or lay out options.
Advanced care planning allows people to maintain authority in their medical decision-making. However, the current legal framework for advance directives make them inadequate as an effective end-of-life planning tool, argues a recent paper from Vearrier, published in the HealthCare Ethics Committee Forum.
Her solution? More mandatory, frank communication between primary care physicians and their patients about the end of life and medical care — longbefore a patient is unhealthy.
Vearrier weighed in on problems with the current end-of-life care paradigm and how it can be improved.
What is end-of-life planning? Who does it primarily concern? A lot of people don’t start talking about end-of-life care until they have a chronic disease, but advance care planning is really something that every adult should be thinking about early on, long before a time of illness, when there are a lot of emotions involved. End-of-life care decisions fall on a continuum that ranges from a focus on prolonging life with all available technology, to a focus primarily on comfort. There are decisions people need to make about, for instance, whether having more time alive with family and friends is preferable, even if that means prolonging suffering and giving up independence. Advance directives, commonly known as a living will, allows you to document your end-of-life medical treatment preferences. A healthcare proxy allows you to designate a person you trust as a decision maker on your behalf.
How did you become interested in the issue of end-of-life planning? In the Emergency Department, I see many patients who are critically ill, and their families haven’t thought about their options ahead of time. When doctors present families with options about their loved one, they often don’t understand what the doctor is talking about, much less what their loved one would want. And with having to deal with the stress of a sick family member, it’s even harder to process new information.
How common are living wills? According to the 2008 Advance Directives and Advance Care Planning: Report to Congress, only 18 to 36 percent of the adult population has completed advance directives. And even those with serious medical conditions have completed advanced directives at only a slightly higher rate. A study of cancer patients in 2000 showed that only 9 percent of patients had discussed advanced directives with their oncologists, and only 23 percent of the remaining patients indicated they wished to do so. There are also differences between racial and socioeconomic groups. The report shows that white race and a higher socioeconomic status are related to a greater likelihood of having a living will.
What is the Physician Orders for Life-Sustaining Treatment Paradigm? POLST was developed as a response to the failed process of advance directives as an end-of-life planning tool, but it is not intended to replace advanced directives. It is a health care planning tool that encourages doctors to speak with patients who are very ill and can be transferred between different health care facilities. A POLST form is completed by a health care professional rather than a patient. The POLST form identifies “Do Not Resuscitate” orders, but it also lists other treatment preferences, like whether a patient would wish to go to a hospital or stay home.
You are critical of the POLST form in your recent paper. Why? POLST has played an important role in increasing the documentation of end-of-life preferences. However, the problem remains that people do not really understand a lot of their options. The POLST form uses a lot of specialized jargon, and it can be even more confusing than advance directives. Even social workers who discuss the forms with their patients have a poor understanding of some of their options. So when it comes time for a physician to interpret the orders, they might not really be fulfilling the patient’s treatment wishes.
What surprised you the most when researching this topic? I was surprised about how poorly people understand their options when it comes to having to make decisions about end-of-life care and also how uncommonly people discuss it with their physicians. Physicians may not even be aware that their patients have an advance directive.
What’s the solution? Increased communication that occurs on a routine, non-emergent basis. I think talking about the end of life and medical care should be a discussion that starts when someone is healthy, with the awareness that it’s something that may, and probably will, change over time. Since treatment preferences may change with age, health status and the current state of medical technology, discussions should occur on a yearly basis with every adult patient in the case that something happens to them. Also, everyone should be discussing their preferences with their families.
A lot of physicians are hesitant or may feel poorly prepared to have these discussions, which is why they don’t happen until someone is ill or has exhausted all of their treatments. Then lack of time becomes a barrier. To change this, it should be something that’s done on a routine basis at every yearly check-up with a primary care doctor. It’s just like the “in case of an emergency” safety protocols that are communicated on every single airplane flight. It’s repeated every time, so everyone is aware what could happen and what the procedure would be. There needs to be a culture shift, so that patients are educated and empowered about their treatment options, in case they are ever in a position where they are no longer capable of making those decisions.
Death doula Shelby Kirillin chats with client Kim McGaughey.
The Angel of Death is surprisingly upbeat.
“I know death is sad, but what’s wrong with dying?” Shelby Kirillin says, green eyes alight. “It’s OK. We’re all going to do it.”
Kirillin is a death doula — someone who guides the dying, and their families, through the end of life.
“You have written so many amazing chapters,” she tells her clients. “Write your last chapter. Put an exclamation point at the end! Make it end in a crescendo. So many people, I feel like, choose death because it’s just better than the hell that they’re living.”
In 18 years as an ICU nurse specializing in neuroscience, Kirillin witnessed too many bad deaths. She heard frantic families ask for every procedure possible in order to prolong life, instead of easing their loved one’s passing. She saw doctors who advocated continuing medical intervention, even when it was obvious that nothing more could be done.
Then in 2012, Kirillin, along with four Virginia Commonwealth University Medical Center colleagues, helped care for a fellow nurse who was dying of cancer. Their assistance allowed their friend to die at home, peacefully. And Kirillin found her new calling.
Kirillin began an apprenticeship with a death midwife in Canada and is completing her certification by the International End of Life Doula Association. Last year, she began practicing in Richmond. Insurance doesn’t cover her services; her fees are based on the time and level of support a client requires.
She’s not a hospice nurse, who manages patients’ medications and physical needs. She doesn’t give medical advice, nor is she a grief counselor. Rather, she is an “end-of-life transition coach,” as one client dubbed her, who guides people through the emotional and spiritual experience of death.
“You have written so many amazing chapters,” she tells her clients. “Write your last chapter. Put an exclamation point at the end! Make it end in a crescendo. So many people, I feel like, choose death because it’s just better than the hell that they’re living.”
“I can’t take away the fact that you have to kneel in a mountain of sorrow,” she says, paraphrasing end-of-life guru BJ Miller. “That can’t be avoided. But what I can do — I’m very much like a birthing doula — I hold the space.”
Family members may be mute in their grief, or mired in doubt, or consumed by guilt. Kirillin helps them to act, to labor along with their loved one. “It’s a beautiful day,” she may say. “Let’s open these windows.” Or, “You want to lay next to your mom? Here, let me move her. Lay next to your mom. Hold her. It’s okay.”
Mary Bolling “Mary Bo” Gassman found out she had cancer just seven weeks before she died. Her husband, Ken Gassman, couldn’t accept it. “I’m an alpha male, OK? And I’ve always been the family patriarch,” Gassman says. He made an executive decision: “We’re going to beat this cancer.”
As a result, Gassman and his oldest daughter, Elizabeth Gassman Chéron, didn’t agree on how best to manage Mary Bo’s symptoms. Chéron wanted to relieve her mother’s suffering; to her father, administering morphine meant bowing to the fact that his beloved wife was dying.
Kirillin became the ambassador, mediating between father and daughter. She encouraged Gassman to stay focused on the goal: not curing the incurable, but giving his wife a reason to wake up the next day, and the day after that. When Chéron admitted, “I just don’t know what to do,” Kirillin told her to trust herself. “You’re doing great,” she said.
On a cool October afternoon, Kirillin said it was time to open the windows. The breeze carried in the sweet scent of wildflowers, Gassman remembers. “A minute or two later, it was gone.” It was 4:32 p.m., and Mary Bo had passed away. “I think Shelby knew how she was going to ride out of there,” he says.
While Kirillin serves the family and friends of those soon to depart, she is chiefly concerned with the desires of the dying. Long before the curtain closes, she says, everyone should clearly state what living means to him or her. Kirillin’s own advance medical directive says, “If I can’t go to a baseball game, follow it, enjoy it and, the next day, remember it, I don’t want to survive.” It’s funny. But it’s true.
When dying becomes a possibility, she speaks with her clients about how they envision their last days. Most people say they want to die at home, for instance, but a hospital may offer more comfort for a patient who’s short of breath.
Kirillin helps people articulate what they want their death to look like, sound like and even smell like. Silence or songs? Coffee or lavender?
“When we die, we lose control,” says her current client, Kim McGaughey. “You don’t have any control over what’s happening, how you’re going to die. But I’ve got a lot of control over the beauty, and how special it is, and how I create this experience.”
At first, McGaughey didn’t want a death doula. After an eight-year battle with cancer, she had just been told she might have weeks to live, instead of months. She was feeling overwhelmed and didn’t want to complicate her dying. Then she met Kirillin and changed her mind.
“I might as well figure out how to do it, so that I enjoy it,” McGaughey says. “I know that sounds weird.”
Kirillin answered McGaughey’s questions about what death feels like. She gathered healing circles of friends and helped McGaughey write her own funeral service. McGaughey has asked her friends to write down memories of times they’ve spent together, and she wants these stories read aloud as she is dying. Everything is prepared.
“I want people to understand that death gets beautiful,” Kirillin says. “Death is amazing.” And sometimes, she says, it feels just like birth.
For more information on death doula services, visit Kirillin’s website, Peaceful Passings.
Nelly Gutierrez, 63, is among those featured in the exhibit and book “Right, before I die.” The Sylmar resident is living with several serious illnesses.
Five years ago, Nelly Gutierrez was devastated by the news that she would need to undergo dialysis for her failing kidneys three days a week for the rest of her life. The Sylmar resident, now 63, also suffers from heart and lung disease, she told the Journal. But it was her diabetes that had wrecked her kidneys and caused her body to swell painfully. A kidney transplant wasn’t a sure thing, and the three-hour dialysis sessions would leave her weak and uncomfortable.
After receiving her diagnosis, “I stopped taking my medications — I just wanted to die,” Gutierrez said in the text interview that accompanies her photograph in the exhibition “Right, before I die,” which will be on display at the Museum of Tolerance (MOT) from Aug. 15 through Sept. 30. “I cried every day and didn’t want to do anything anymore. I gave away all of my stuff.”
A year later, Gutierrez prayed to God for help as she struggled with wanting to end her life. Soon thereafter, she got the idea to volunteer at a senior center, working with elderly people also facing issues of life and death. The endeavor gave her own life meaning, even as her body continued to fail. “My joy is to see people smiling and to have the courage to go on with their lives,” she told the Journal.
Gutierrez is one of 20 patients profiled through photographs, text interviews and handwritten letters in Andrew George’s “Right, before I die”; she is the only one of his subjects still alive. In her portrait, she appears dignified and well dressed, with a bandage from a dialysis treatment peeking out from behind her blazer.
The subjects also include Sarah, who appears to be in her early 30s and is bald from chemotherapy yet smiling faintly. In her text interview, Sarah declares, “Time is so precious. God, it’s precious.”
Then there is Michael, a former junkie who went on to found eight Christian missions in Mexico, where he regularly provided food and supplies to the communities. “I can walk out of this earth with my head help up high and just go the way I came, naked,” he says in his interview.
Press materials for the exhibition note that the show is intended as a “counterpoint” to California’s End of Life Option Act, which went into effect on June 9. The law gives terminally ill patients diagnosed with six or fewer months to live who have the capacity to make medical decisions the right to seek a lethal prescription from a physician. Most Jewish groups have opposed the law because of the concept of pikuach nefesh — the mandate to protect human life.
“At its core, the exhibition speaks to the importance of human dignity, which is an essential theme of the Museum of Tolerance,” Liebe Geft, director of the MOT, said in an email.
Dr. Ira Byock, a leading expert in palliative and hospice care who has vociferously opposed doctor-assisted suicide, helped arrange for the exhibition to be sponsored by the Providence Institute for Human Caring, where he serves as chief medical officer. “This is our attempt … to open a window into the lived experience of illness and dying,” Byock said during an interview in his Torrance office. “What you find … when you look at these pictures and read some of the quotes is the surprising fact that, first, these people are living during the time that we would consider them to be dying. In addition to the struggles and the sadness and all of the challenges that death represents, this sense of well-being … is also possible.”
George, who supports the End of Life Option Act as a means to offer an additional choice to the terminally ill, was not considering politics when he set out to create his exhibition in around 2011. Rather, he was prompted to embark on the project after attending the funeral of a friend’s mother five years ago. “She was so loved by everyone, and I wondered, how do you create that effect during your lifetime?” George, whose studio is located in West Los Angeles, said in a telephone interview. “I thought this woman had figured something out that we can all learn from. So I wanted to make a project about people [like her].”
George chose to focus on seriously ill and dying patients who had overcome the fear of death and could impart a degree of wisdom about life. To find potential subjects, he approached officials at dozens of hospitals and hospices around Los Angeles, all of whom turned him down. But in 2012, Dr. Marwa Kilani at Providence Holy Cross Medical Center seemed to understand his goals and agreed to refer him to patients who displayed a particular kind of grit.
Photographer Andrew George is based in Los Angeles. His work has been in 18 international exhibitions, most recently at Musea Brugge in Belgium.
Whenever he heard from one of these patients, “I would drop everything and drive an hour to the hospital, sit with them for four or five hours and ask the 37 questions I had come up with,” George said. Those queries included, Do you have any regrets? What brings you joy? And do you experience love?
Yet George eschewed asking his interviewees to disclose their illnesses, religious background or past professions. “I wanted to cut through anything that might create a barrier between viewer and [subject],” he said.
To shoot the patients’ photographs, George used a medium format Hasselblad camera, “which captures every hair and imperfection,” he said. In his photographs, each person’s head is life-size, “so it’s like you’re looking through glass and actually viewing the person.”
The project wasn’t without challenges. “These people were often withered; they weren’t presenting the best of themselves,” George said. Further, as the photographer, he struggled to “find something beautiful” in the patients amidst the hospital’s fluorescent lighting and bland décor. “I strove to celebrate the soul of each individual,” he said. “In their own way, each of my subjects was enlightened.”
George and Byock — who traces his concern for the value of all humans to his Jewish background — will speak at the show’s opening reception at the MOT on Aug. 18.
“I’m going to talk about the importance of this cultural moment, in which the baby boomers have become the silver tsunami,” Byock said. “In our culture, we are living with people who are older than ever before in human history.
“So many people are living quite well, and often for many years with diseases that would have killed them [in previous generations]. Yet culturally, we have not developed to make full use of these unprecedented changes. … This exhibition is another opportunity for us to grow the rest of the way up.”
