Category: Philosophy of Dying

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Dying at home: What I learned from my husband’s death

Dr. Donald Low, centre, confers in the lab at the Ministry of Health and Long-Term Care about the results of the Legionella outbreak at Seven Oaks Home for the Aged in 2005.

By Maureen Taylor

[T]he night my husband died, I slept beside his corpse in our bed. All night. This wasn’t exactly by choice: the funeral home did not retrieve bodies after 8 p.m., and there was no other bed available for me to sleep in, as all our children were home to help care for their father.

I tell this story whenever I discuss the realities of dying at home. Even as a physician assistant, I did not appreciate the challenges — or the immense rewards — of caring for my husband at home until his death.

According to a 2014 Harris/Decima survey, of those Canadians who express a preference for where they want to die, 75 per cent say they want to die at home, surrounded by loved ones. Interestingly, another Canadian study found that those loved ones aren’t quite as keen on the experience: half of the patients who said they wanted to die at home had family members who hoped the death would take place in an institution, like a palliative care unit. No matter: The majority (about 65 per cent) die in a hospital, which isn’t anybody’s first choice.

The palliative care and hospice community often use this data to advocate for more government funding of community supports, such as personal support workers, to help people die at home. And they’re right that home care and palliative care access is too uneven across Canada and in urgent need of more funding.

But what we don’t understand is how many of these hospitalizations at the end of life could be diverted with more nursing, more personal support workers, more respite for family caregivers. I believe that without better education around what’s involved in dying at home, extra resources won’t be enough.

Dying is messy. It shouldn’t have to be painful anymore, though in some cases, only deep sedation can relieve the worst pain. But pain aside, there is no getting around the progressive weakness, the loss of appetite, the fluctuating level of consciousness, the need for diapers or a catheter, and eventually, the shallow, laboured breathing. None of this has to be distressing for the patient, who can, if needed, be heavily drugged or even sedated. But it can be extremely distressing for family members to witness, and it can go on for days and, in some cases, weeks.

When I worked as a physician assistant in the emergency department, I saw many patients brought in by ambulance in those last stages of their disease. When I spoke to the family members, it was often clear they were overwhelmed by very predictable symptoms. But no one had laid it all out for them before. They weren’t looking for miracles — they accepted that death was inevitable — but they felt unprepared and untrained for the burden of watching their loved one struggle to breathe, to communicate, to just let go. Sometimes a spouse confessed that as the husband or wife’s death neared, they worried they’d always associate the home with the death. And so, they dialed 911.

How can we better support those family caregivers so that they don’t end up in the emergency department? Prepare them. Acknowledge the messiness of death. And obviously, provide palliative care resources.

In our house, I had a frank discussion with all the kids and even our cleaning lady: no matter how bad Don looked, no one was ever to call 911. I knew that if he was taken to hospital, he’d never come home again, and he’d die there. Our palliative care team had a binder that stayed on the kitchen counter, with Don’s Do Not Resuscitate order at the front. We had a nurse we could call if his symptoms weren’t being managed well. Don had opted for terminal sedation at the end: an induced coma, without food or fluids. The palliative care physician visited every few days to make sure the drugs were working, and to give us his best guess as to how much longer Don could go on like that.

I often see frail, elderly spouses who try to provide this care for their dying loved ones at home, and it wasn’t difficult to understand why they struggled. There’s no question that we were luckier than most families: I was relatively young, and we had the resources for me to stay at home and care for Don from the night they diagnosed his brain tumour until his death seven months later. Our children were incredibly strong and present, and we took turns doing even the most personal and intimate tasks for him.

Don had desperately wanted an assisted death, an option unavailable to him at the time. But if he had to die “naturally,” he told us, he’d prefer not to have strangers assisting him. In the end — only after Don was sedated, and with no small amount of guilt, we accepted help from those “strangers” to bathe him and turn him so he wouldn’t get bed sores.

There was so little comfort we could take in the fact of Don’s too-early terminal illness. But knowing that we helped him fulfil at least one of his wishes for his death — that he die at home — was comforting to us. And I thoroughly recommend it to other families if they can manage.

After Don died in my arms, all the kids came up to our bedroom and we surrounded him, breaking out his favourite scotch and sharing stories and memories. The palliative care doctor on call came to pronounce him dead and then I called the funeral home. And learned he’d be spending one more night beside me.

I’ll admit, it was weird. But as I pulled up the covers, I found they were mostly over on his side of the bed, and I smiled and looked over at his sweet face one last time. “Really Don? Hogging the covers, even in death?” And I slept soundly all night.

Complete Article HERE!

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Dying is happier than you think

[F]ear of death is a fundamental part of the human experience–we dread the possibility of pain and suffering and we worry that we’ll face the end alone. Although thinking about dying can cause considerable angst, new research suggests that the actual emotional experiences of the dying are both more positive and less negative than people expect.

The findings are published in Psychological Science, a journal of the Association for Psychological Science.

“When we imagine our emotions as we approach death, we think mostly of sadness and terror,” says psychological scientist Kurt Gray of the University of North Carolina at Chapel Hill. “But it turns out, dying is less sad and terrifying–and happier–than you think.”

The research, which examined the writings of terminally ill patients and inmates on death row, suggests that we focus disproportionately on the negative emotions caused by dying, without considering the broader context of everyday life.

“Humans are incredibly adaptive – both physically and emotionally–and we go about our daily lives whether we’re dying or not,” Gray explains. “In our imagination, dying is lonely and meaningless, but the final blog posts of terminally ill patients and the last words of death row inmates are filled with love, social connection, and meaning.”

The positive emotions that come with this kind of meaning-making were exquisitely displayed in a recent Modern Love column, written by beloved children’s author Amy Krouse Rosenthal. Rosenthal, who died of ovarian cancer 10 days after her column was published in The New York Times, wrote with profound love and humor about finding someone to marry her husband after she died.

“The column was so touching because it was so positive, so filled with love and hope,” says Gray. “While such positivity seems strange in someone so near death, our work shows that it is actually fairly typical.”

Gray, his graduate student Amelia Goranson, and their co-authors Ryan Ritter, Adam Waytz, and Michael Norton started thinking about the emotional experience of dying when they came across the last words of death-row inmates in Texas, collected by the state’s Department of Justice. They were surprised by how upbeat the statements were, and wondered whether our feelings about death and dying might be clouded by our tendency to zero in on negative experiences.

In their first study, Gray and colleagues analyzed the emotional content of blog posts from terminally ill patients who were dying of either cancer or amyotrophic lateral sclerosis (ALS). To be included in the study, the blogs had to have at least 10 posts over at least 3 months and the author had to have died in the course of writing the blog. For comparison, the researchers asked a group of online participants to imagine that they had been diagnosed with terminal cancer and to write a blog post, keeping in mind that they had only a few months to live.

Using a computer-based algorithm, trained research assistant coders, and online participant coders, the researchers analyzed the actual and imagined blog posts for words that described negative and positive emotions, such as “fear,” “terror,” “anxiety,” “happiness,” and “love.”

The results revealed that blog posts from individuals who were terminally ill included considerably more positive emotion words and fewer negative emotion words than did those written by participants who simply imagined they were dying.

Looking at the patients’ blog posts over time, the researchers also found that their use of positive emotion words actually increased as they neared death, while their use of negative emotion words did not. These patterns held even after Gray and colleagues took the overall word count and number of blog posts into account, suggesting that the increase in positive emotion words was not simply due to the effects of writing over time.

In a second study, the researchers conducted similar analyses comparing the last words of inmates on death row with the poetry of death-row inmates and the imagined last words of another group of online participants.

Again, they found that the words of those who were actually close to death were less negative and more positive in emotional tone than the words of those who were not close to death.

Both the terminally ill patients and the inmates facing execution seemed to focus on things that help us make meaning of life, including religion and family, suggesting that such things may help to quell anxiety about death as it approaches.

Gray and his co-authors acknowledge that the findings may not apply to all people who are approaching death – it’s unclear whether individuals facing a great deal of uncertainty or those who die of old age express similarly positive emotions near the end of life.

Ultimately, the findings suggest that our expectations may not match the reality of dying, which has important implications for how we treat people who are dying.

“Currently, the medical system is geared toward avoiding death–an avoidance that is often motivated by views of death as terrible and tragic,” the researchers write in their paper. “This focus is understandable given cultural narratives of death’s negativity, but our results suggest that death is more positive than people expect: Meeting the grim reaper may not be as grim as it seems.”

Complete Article HERE!

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A good life eases pain of parting

Krissi Goetz

By Krissi Goetz

[T]he day this column hits print marks one year since my first and very beloved dog took his last breath.

He was a remarkable dog for many reasons, the most notable his determination. He not only showed me what marvelous company a dog could be but pointed me down a path in life. Thanks to him, improving the lives of dogs — and their people — is my mission.

So it was everyone’s first guess, including my own, that I would be reduced to shambles after his death. But strangely enough, I was OK.

Don’t get me wrong. It was heartbreaking, and I’m still brought to tears even thinking about him. But his passing was, for me, just about the best I could hope for.

I had a good idea of what a good death looked like, and that’s how it happened. He’d had a long and full life, and I had lots of time to see the end coming and prepare. I did everything I could to help him be comfortable and happy. He showed me when it was time, and luckily it was a beautiful day when it happened. I had weeks to convey to him how much he meant to me, to thank him for all he had done. And I was right next to him when he died, the vet helping him along as he lay in the grass at the farm on a spectacular spring day. It wasn’t perfect, but pretty close.

Of course, what’s an ideal passing depends on who you are asking. Everyone has a different idea of what a good death looks like. But it’s certainly worth thinking about so that when the time does come you have an idea of what would be best for you and your beloved friend.

Indeed, our animals can have clear wishes. While I was fortunate to have another dog pass similarly to my first, my calico cat was a different story. A fierce little creature, she was unlikely be pleased to see the vet — or have anyone suggest she was dying, for that matter. When she stopped eating due to cancer at 15, I arranged my life so I could be by her side at all hours. She seemed to appreciate that. After a week of my carrying her to lay out in the autumn sunshine and back inside to lay in bed, she died in my arms. It was, again, just about perfect.

Nonetheless, after letting my cat choose her own time, I felt similarly to when my dogs had died. It’s hard to put into words. Saddened, of course, yet also perhaps content. With few regrets. Perhaps I wasn’t as devastated as I thought I’d be because I’d had enough time before their death to prepare and adjust, and it went as I’d hoped.

The rituals that surround death also play a part in grieving, and here, too, we all have our own. Many people bury their beloved animals, others choose cremation. A friend of mine shared photos of the pyre she built for her dog, a stunningly beautiful creation. Our individual rituals surrounding a death can help immensely during a difficult time.

Of course, having a dog’s passing go smoothly may not happen. You can’t always be lucky. Sometimes our dogs die unexpectedly. Sometimes you aren’t there. I’ve had that happen, too, and find that harder.

Two months after I began fostering a special young dog he was killed out on a walk with someone else. I was understandably a mess. But a couple of aspects kept coming back to me: He died instantly. He did not die alone and scared in a shelter. And right before he left on that walk I had taken a moment to give him my attention and convey to him that I loved him. Isn’t it funny that nearly 15 years later I can still remember that detail? That was my biggest consolation after his death: that he knew he was loved.

Maybe what really helps make a good death is a good life. Ensuring our dogs have a full and rich daily existence and that they know they are loved may be the best way to finding yourself with few regrets, regardless of how they leave us. I do my best to find time every day to do something with my dogs that we really enjoy, to be aware of and appreciate them and to incorporate little daily rituals to convey to them they are loved. So while what a good death looks like is certainly something to think about sometimes, what a good life looks like is something to think about each and every day.

Complete Article HERE!

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How clergy can help believers die a ‘good death’

U.S. clergy may be increasing the sting of death for many members of their flocks.

By David Briggs

[T]wo new studies find that many clergy are both ill-prepared and reluctant to fully engage in end-of-life conversations with terminally ill congregation members and their families.

The result, both studies suggest, is that more believers may be spending their final days enduring painful treatments with little chance of success in intensive care units rather than receiving comfort care at home.

One of the studies was a national survey of more than 1,000 clergy. The other involved in-depth interviews with 35 ministers from five states. The research raises three critical areas of concern:

· Too much faith in miracles: More than three in 10 clergy in the national survey said they would strongly agree with a congregant who said, “I believe God will cure me of this cancer.” Eighteen percent affirmed the belief that every medical treatment should be accepted “because my faith says to do everything I can to stay alive.”

· Lack of knowledge: In the in-depth study, spiritual leaders showed little knowledge of end-of-life care, including the benefits of palliative care and potential harms associated with invasive interventions. “Many grossly overestimated the benefits of aggressive medical procedures at the end of life,” researchers reported in the Journal of Palliative Medicine. Three-quarters said they would like more training in end-of-life issues.

· Fear of overstepping boundaries: The default position of many clergy, even those who personally believed it was against God’s will to suffer unnecessarily, was to merely support the decisions of dying congregants and their family members.

But even such passivity has consequences, researchers said, in that it can enable congregants to seek potentially nonbeneficial treatments that are associated with increased suffering.

The larger problem was summarized by one study participant: “We have not done a good job…on preparing people to die–that they don’t need to live the last days of their lives under terrible and excruciating pain.”

Competing principles

The new studies are part of The National Clergy Project on End-of-Life Care,

What is clear in both studies is the complexity in end-of-life decision making.

Spiritual principles such as the sacredness of life and the capacity for divine healing may come into conflict with other religious principles to comfort the suffering and place faith that God will care for individuals after this life.

For example, clergy were asked in the national study what they would talk about when visiting a patient with cancer and no hope for a cure.

Fifty-six percent said it is important to encourage acceptance of dying as part of God’s plan. Two-thirds would place a priority on suggesting hospice as a good idea. Eighty percent said it is important to talk about heaven and life after death.

Yet, 60 percent also would strongly encourage prayer for physical healing, holding out hope for a miracle.

At one extreme, 18 percent of clergy endorsed the idea of accepting every medical treatment to prolong life, and 16 percent said doctors and nurses should do everything possible to extend the life of a patient.

The clergy most likely to place their faith in divine healing were from the black church, Pentecostal and evangelical traditions and those serving low-income congregations, researchers noted in the Journal of Pain and Symptom Management.

The attitudes mattered to their flocks.

Clergy that endorsed life-prolonging religious values were approximately half as likely as other clergy to have a discussion concerning entering hospice, stopping treatment or forgoing treatment. The absence of a clergy-congregant hospice discussion was associated with less hospice and more ICU care.

In the in-depth interviews, no clergyperson said aggressive care was an “absolute good.” Several said it hampered a good death, and one said it was an “absolute bad,” researchers reported.

Yet despite their own strong views, many clergy refrained from influencing decisions about end-of-life care.

The ministers said they did not offer guidance out of respect for the “free will” of congregants, but researchers indicated a lack of knowledge of the medical consequences also played a role.

Humble approach

What can be done to assist clergy in helping religious individuals make better informed decisions about end-of-life care?

Clergy education is critical, researchers from both studies said.

The studies concluded that clergy training focused on the intersection of religious values and medical issues at the end of life offer several opportunities for improving care, including:

· Closing the gap between the clergy’s beliefs and actions.

· Empowering clergy to counsel congregants about the moral and spiritual implications of end-of-life medical decisions.

· Supporting religiously informed decision making by patients that minimizes unnecessary physical and spiritual suffering.

· Creating partnerships of ministers and disease-based and palliative care clinicians.

What clergy say – and what they do not say – can make a major difference in whether believers experience a “good death,” the studies find.

“There are times,” one black minister from Chicago told researchers, “Death itself is a cure to what ails you. It’s the healing.’’

Complete Article HERE!

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Death with dignity

When end-of-life wishes collide with untenable costs

My grandmother and grandfather celebrating their 50th anniversary.

By

[I]ntellect was the core of my grandmother’s identity. Rita loved reading biographies, watching dramas, and traveling to new countries. But about ten years ago, her mind began to deteriorate. Now she cannot read, speak or recognize people — the antithesis of her previous intellectual self.

Then she lost the ability to eat. When a piece of food went down the wrong pipe three years ago, her lungs filled with fluid and the pneumonia that followed brought her and the entire family to the hospital. The doctor suggested we consult a palliative care specialist and let her die peacefully. The alternative was to insert a feeding tube.

Rita had recorded her end-of-life wishes. The document reads, “I feel especially strongly about the following forms of treatment … I do not want tube feeding.” But the same document also assigned her health care decisions to my grandfather. And he couldn’t let her go. “She doesn’t know how great the new technology is,” he stressed.

Despite Rita’s explicit wishes, she sits on the couch now, her vacant gaze fixed to the TV screen where Mary Poppins plays on repeat. She doesn’t comprehend that the vivid world in which Julie Andrews sings and dances is one she used to inhabit too.

For some, innovative devices like Rita’s feeding tube are a medical miracle. For others, they prolong a painful and unwanted existence. Even though Rita wanted to die at the natural time, she lost the mental capacity to execute that decision.

When faced with a terminal illness, many mentally competent people recognize the harrowing challenges ahead. These challenges span from loss of autonomy, like my grandmother’s case, to physical deterioration and excruciating pain. To allow these patients more freedom in determining their future, six states have legalized physician-assisted dying.

But even that path has hurdles, as the price of the conventional life-ending medication Seconal has ballooned to upwards of $3,000 under pharmaceutical giants prowling for profit. The steep price has driven doctors, mortally-ill patients and health care experts to wrestle with financial inequality at the final moments of life.

“It’s an example of inequities in our health care system. People have a right to do something but they don’t have a right to get it at a reasonable price,” says Dr. Stuart Youngner, a professor of bioethics and psychiatry at Case Western Reserve University.

Washington state legalized physician-assisted dying in 2008, and the price of Seconal has gradually risen from a few hundred dollars to over $3,000, according to a study published in JAMA Oncology. The highest increase was in 2015, when the Canadian pharmaceutical company Valeant Pharmaceuticals acquired the drug and doubled its price from $1,500 to $3,000.

The increase occurred a month after aid-in-dying legislation was introduced in California, potentially expanding Seconal’s market. Valeant Pharmaceuticals stated that the price was determined by multiple factors including generic alternatives and development costs. (Although the drug has been available since the 1930s.)

This certainly isn’t the first time Valeant has garnered criticism. State and federal agencies have launched multiple investigations into the company’s troubling prices and practices. And Valeant isn’t the only culprit. In December, the Senate investigated high drug prices, and the constant need for pharmaceutical companies to repay investors created a “business model that harms patients, taxpayers and the U.S. health care system,” according to their report.

“What does it mean with yet another instance of pharmaceutical companies seeming to increase the cost of medicines to artificially drive up prices?” asks bioethicist Dr. Robert Arnold, director of the Palliative and Supportive Institute at the University of Pittsburgh Medical Center. “It seems to me that that question isn’t unique to this issue. That question has happened an enormous number of times over the last couple years.”

“As a society,” he continues, “how do we deal with these issues of man-made shortages of medicine?”

A team of doctors in the Northwest grappled with just that question. Doctors at End of Life Washington counsel terminally ill patients and their families about end-of-life options. Some clients couldn’t afford Seconal. Others couldn’t fathom shelling out thousands of dollars to simply die a peaceful death. So seven doctors got together to create a less expensive life-ending medication.

“We all felt responsible for giving patients another option that would be affordable,” says Dr. Therese Law, the medical director of End of Life Choices Washington and a retired physician of 35 years who helped develop the medication.

The team participated in meetings and conference calls over the next few months. They discussed various compounds and dosages that could be used for the lethal mixture. The medication would be prescribed by a physician and obtained at a compounding pharmacy, which dispenses medications whose components and dosages are tailored to the individual patient.

“I think it was a very careful deliberation between pharmacists and prescribing physicians and cardiologists. We talked about various different medications and their effects and their side effects,” Law says.

The doctors had to continuously assess the medication. A few family members reported that the first combination led to a painful burning sensation in the person’s throat. The second version made some deaths take too long. The doctors are currently gathering data to research a third protocol.

“Their intent I do not challenge, nor do I challenge the patient’s desire to have this done. I’m wondering about if their execution of their goals might not be optimal … Is there a better way of approaching the problem?” says Dr. Maurie Markman, the president of Medicine and Science at Cancer Treatment Centers of America.

Part of the problem is that a perfect parallel does not exist. Canada legalized euthanasia last year, in which a doctor uses a lethal injection to hasten a patient’s death. In Europe, drugs called barbiturates are often used, but Americans can’t purchase them, as the European Union applied sanctions to limit barbiturate exports to the United States in opposition to its death penalty.

Should physicians devote their time to helping patients circumvent pharmaceutical greed? This doesn’t seem like the way doctors should spend their time or the way patients should get their healthcare. And Seconal represents a particularly poignant example, since terminally ill patients have often spent an enormous amount of money on medication already.

“In a sense it’s ironic, because a lot of the critics of physician-assisted suicide are worried that poor people will be taken advantage of,” Younger says. “It looks like in this case poor people will be discriminated out of it, not discriminated into it.”

My grandmother is stuck in a manmade medical purgatory, a state she never would have chosen for herself. To some it represents progress, but to me, it’s hard to watch. As society continues to propel medicine forward, we need to allow people choice in how they die. And the right to a dignified death should extend to everyone — regardless of how much money is in their wallet.

Complete Article HERE!

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So, you want to hire a death doula?

Three things to consider

By Amy Wright Glenn

It is estimated that 6 percent of American women now hire birth doulas for emotional, physical and even spiritual support during labor and delivery. Twenty years ago, when the birth and postpartum doula movement was in its nascent stage, this percentage was certainly much, much lower.

In fact, 20 years ago, the word “doula” itself evoked quizzical looks. Even 10 years ago, following my initial certification with DONA International, friends, family and colleagues would often inquire: “What’s a doula?” Today, the term has become a part of our common lexicon. Most Americans recognize its meaning: A birth doula is a professional trained in comfort measures, listening techniques and providing compassionate care to women as they labor to give birth.

But, what about death?

How many Americans have heard of “death doulas”?

Today, wise and creative cultural pioneers lead a burgeoning movement in applying key elements of the birth doula model to train people to companion each other in death. Given that our experience of death has become so institutionalized and medicalized, applying the doula model of care to death and dying represents a sane and needed grounding in the wisdom of compassion, companioning and proven comfort measures.

Henry Fersko-Weiss is such a pioneer. Author of “Caring for the Dying: The Doula Approach to a Meaningful Death,” Fersko-Weiss has trained more than 350 death doulas through the International End of Life Doula Association. Fersko-Weiss believes that the end-of-life doula movement will grow faster than the birth doula movement did because the birth doula movement “brought the word doula into American consciousness.”

As someone who holds space for both birth and death, I’m hopeful that Fersko-Weiss is right. My specialty is in working with bereaved parents who know the pain of miscarriage, stillbirth and/or infant death. I’ve witnessed firsthand that there is much wisdom to be gained by applying the doula approach of caregiving to the concluding threshold points of our earthly existence. Certified hospice and palliative nurse and end-of-life doula Deanna Cochran agrees. Cochran has been mentoring and training death doulas since 2010. She remembers her initial pull to death doula work after working for several years in acute care and oncology. She remembers how it became “overwhelmingly clear” that “so much needless suffering was going on, and I wanted to be a part of changing that.”

When our loved ones are dying, we certainly work diligently to end needless suffering. But much of human suffering is emotional and psychological. Physical pain can be alleviated through medicine, but what of the pain of grief? Just as more and more American women have turned to birth doulas to help buoy their courage and strength as they traverse the landscape of labor and delivery, more and more Americans – should they know death doulas exist – will turn to death doulas to companion them through the wilderness of loss.

So, what to look for when hiring a death doula? Consider these three simple points.

  1. Seek out someone who has experience and training. Seek out a certified death doula, if possible. A growing number of organizations offer quality end-of-life doula training. Inquire if a certified and/or trained doula works in your vicinity. If possible, interview more than one potential candidate to ascertain which doula will be the best match for your situation. Inquire about their training, past experience, philosophy in holding vigil and what specific comfort measures they can bring to both the dying and the bereaved.
  2. Seek online and/or phone support as needed. Trained death doulas may not live in your area, but in the age of Skype and FaceTime, one can still benefit from a virtual companion. While there is much to be said for face-to-face interaction and the healing power of comforting touch, it is better to have quality support than to go without care. If you are the primary caregiver for a dying relative or friend, reaching out to expand your own support network is especially a very good idea.
  3. Read and research about the doula approach to caring for the dying. It’s certainly possible to bring key aspects of doula caregiving into one’s personal experience with family and friends. Knowledge and insight gained can help you strengthen your confidence and expand your skill set as you offer your presence in vigil for the dying.

Each month, I receive emails from individuals interested in finding an end-of-life doula. “Can you help me find a death doula? My grandfather is dying.” Or “My mother is nearing death and I’m alone in caring for her, can you recommend an end-of-life doula who can support us?” Such requests carry the weight of a great deal of sadness. It’s helpful to remember that we don’t have to walk through the valley of bereavement alone. Whether our grieving is extremely complicated or pretty straightforward, it is real. It hurts. And death doulas are here to offer up their compassion and skill. They hold us as we hold our sorrow.

Complete Article HERE!

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Can Comfort Care At The ER Help Older People Live Longer And Suffer Less?

As baby boomers age, more older Americans are visiting the emergency room, which can be an overcrowded, disorienting and even traumatic place.

By Melissa Bailey

[A] man sobbed in a New York emergency room. His elderly wife, who suffered from advanced dementia, had just had a breathing tube stuck down her throat. He knew she never would have wanted that. Now he had to decide whether to reverse the life-sustaining treatment that medics had begun.

When Dr. Kei Ouchi faced this family as a young resident at Long Island Jewish Medical Center, he had no idea what to say. The husband, who had cared for his wife for the past 10 years, knew her condition had declined so much that she wouldn’t want to be rescued. But when Ouchi offered to take out the tube, the man cried more: “She’s breathing. How can we stop that?”

Ouchi had pursued emergency medicine to rescue victims of gunshot wounds and car crashes. He was unprepared, he says, for what he encountered: a stream of older patients with serious illnesses like dementia, cancer and heart disease — patients for whom the life-saving techniques he was trained to perform often only prolonged the suffering.

As baby boomers age, more of them are visiting the emergency room, which can be an overcrowded, disorienting and even traumatic place. Adults 65 and older made 20.8 million emergency room visits in 2013, up from 16.2 million in 2000, according to the most recent hospital survey by the Centers for Disease Control and Prevention. The survey found 1 in 6 visits to the ER were made by an older patient, a proportion that’s expected to rise.

Half of adults in this age group visit the ER in their last month of life, according to a study in the journal Health Affairs. Of those, half die in the hospital, even though most people say they’d prefer to die at home.

The influx is prompting more clinicians to rethink what happens in the fast-paced emergency room, where the default is to do everything possible to extend life. Hospitals across the country — including in Ohio, Texas, Virginia and New Jersey — are bringing palliative care, which focuses on improving quality of life for patients with advanced illness, into the emergency department.

Interest is growing among doctors: 149 emergency physicians have become certified in palliative care since that option became available just over a decade ago, and others are working closely with palliative care teams. But efforts to transform the ER face significant challenges, including a lack of time, staffing and expertise, not to mention a culture clash.

Researchers who interviewed emergency room staff at two Boston hospitals, for instance, found resistance to palliative care. ER doctors questioned how they could handle delicate end-of-life conversations for patients they barely knew. Others argued that the ER, with its “cold, simple rooms” and drunken patients screaming, is not an appropriate place to provide palliative care, which tends to physical, psychological and spiritual needs.

Ouchi saw some of these challenges during his residency in New York, when he visited the homes of older patients who frequently visited the emergency room. He saw how obstacles like transportation, frailty and poor vision made it difficult for them to leave the house to see a doctor.

“So what do they do?” Ouchi asks. “They call 911.”

When these patients arrive at the emergency room, doctors treat their acute symptoms, but not their underlying needs, Ouchi says. In more severe cases, when the patient can’t talk and doesn’t have an advanced directive or a medical decision-maker available, doctors pursue the most aggressive care possible to keep them alive: CPR, intravenous fluids, breathing tubes.

“Our default in the ER is pedal to the metal,” says Dr. Corita Grudzen, an emergency physician at NYU Langone Medical Center who studies palliative care in the ER. But when doctors learn after the fact that the patient would not have wanted that, the emergency rescue forces families to choose whether to remove life support.

When older adults are very ill — if they need an IV drip to maintain blood pressure, a ventilator to breathe, or medication to restart the heart — they are most likely to end up in an intensive care unit, where the risk of developing hospital-acquired infections and delirium is increased, Grudzen says. Meanwhile, it’s not clear whether these aggressive interventions really extend their lives, she adds.

Some have sought to address these problems by creating separate, quieter emergency rooms for older patients. Others say bringing palliative care consultations into regular emergency rooms could reduce hospitalization, drive down costs and even extend life.

There’s no hard evidence that this approach will live up to its promise. The only major randomized controlled trial, which Grudzen led at Mount Sinai Hospital in New York City, found that palliative care consultations in the emergency room improved quality of life for cancer patients. It did not find statistically significant evidence that the consultations improved rates of survival, depression, ICU admission or discharge to hospice.

Trying to avert suffering

But frontline doctors say they’re seeing how palliative care in the ER can avert suffering. For instance, Ouchi recalls one patient — a man, in his late 60s — who showed up at the emergency room for the fifth time in six months with fever and back pain. Previous visits hadn’t addressed the underlying problem: The man was dying of cancer.

This time, a nurse and social worker called in a palliative care team, who talked to the patient about his goals.

“All he wanted was to be comfortable at home,” Ouchi says. The man enrolled in hospice, a form of palliative care for terminally ill patients. He died about six months later, at home.

Now Ouchi and others are trying to come up with systematic ways to identify which patients could benefit from palliative care.

One such screening tool, dubbed P-CaRES, developed at Brown University in Providence, R.I., gives ER doctors a list of questions. Does the patient have life-limiting conditions such as advanced dementia or sepsis? How often does the patient visit the ER? Would the doctor be surprised if the patient died within 12 months?

Doctors are using the tool to refer patients at the University of California-San Francisco Medical Center at Parnassus to palliative care doctors, says Dr. Kalie Dove-Maguire, a clinical instructor there. The questions pop up automatically on the electronic medical record for every ER patient who is about to be admitted to the hospital.

Dove-Maguire says UCSF hasn’t published results, but the tool has helped individual patients, including a middle-aged man with widespread cancer who showed up at the ER with low blood pressure. The man “would have been admitted to the ICU with lines and tubes and invasive procedures,” she says, but staff talked to his family, learned his wishes and sent him to home hospice.

“Having that conversation in the ER, which is the entry point to the hospital, is vital,” Dove-Maguire says.

Measured in minutes

But time is scarce in ERs. Doctors’ performance is measured in minutes, Grudzen notes, and the longer they stop to make calls to refer one patient to hospice, the more patients line up waiting for a bed.

Finding someone to have conversations about a patient’s goals of care can be difficult, too. Ouchi enlisted ER doctors to use the screening tool for 207 older ER patients at Brigham and Women’s Hospital in Boston, where he now works as an emergency physician. They found a third of the patients would have benefited from a palliative care consultation. But there aren’t nearly enough palliative care doctors to provide that level of care, Ouchi says.

“The workforce for specialty palliative care is tiny, and the need is growing,” says Grudzen.

Palliative care is a relatively new specialty, and there’s a national shortfall of as many as 18,000 palliative care doctors, according to one estimate.

“We’ve got to teach cardiologists, intensivists, emergency physicians, how to do palliative care,” she said. “We really have to teach ourselves the skills.”

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