When a doctor and patient disagree about care at the end of life

By Ravi Parikh

Sometimes, doctors and patients disagree about end-of-life care. I know, because it happened with me.

Not long ago, a frail-looking elderly patient appeared at my cardiac health clinic with a file full of hospitalizations stemming from a heart attack years before. He’d had three coronary stents put in, had had heart bypass surgery and was unable to walk for more than a block due to chest pain. I saw that a previous doctor had written “DNR” — do not resuscitate — in his chart, so I asked him to confirm his wishes.

No, he said, to my surprise. He actually wanted to be a “full code” — meaning that chest compressions, shocks and intubation were to be used if necessary to keep him alive.

I was taken aback. Someone had presumably told him that he would probably not survive a cardiac arrest even with cardiopulmonary resuscitation. (Only 1 out of 7 patients older than 80 do; this man was close to 90.)

“I don’t want anyone giving up on me,” he said. No matter how much I explained that CPR would probably only cause him to suffer longer without adding to his life, he remained adamant. He left my office visit with a yellow “full code” indicator in his chart instead of the red “DNR” one.

When I walked home that night, I couldn’t help thinking how badly our conversation had gone. I had discussed end-of-life planning with many patients, and usually we’d been able to come to decisions that made sense both medically and to the patient. But not this time.

Maybe I hadn’t explained the facts well enough; maybe there was a language barrier; or maybe he just didn’t trust me.

Medicare recently put in place new rules that will allow doctors to be reimbursed for discussing end-of-life preferences with patients.

Originally derailed by the “death panel” accusations of 2010, the measure has been hailed as a major victory toward a better, more transparent system of end-of-life care. Patrick Conway, the chief medical officer for the Centers for Medicare and Medicaid Services, remarked that such advance-care planning discussions were important to promote “patient- and family-centered care.”

But sometimes these discussions are anything but patient-centered. That’s because what the doctor wants doesn’t always align with what the patient needs.

As a resident, I approach most end-of-life conversations with a narrow focus: Confirm a code status and get the name of an emergency contact person. “Do you want to be resuscitated if you lost your pulse?” “Do you want to have a breathing tube if you were unable to breathe on your own?” “Whom should we contact in case of an emergency?” I needed to document answers to those questions to finish my patient-chart note. With my pager ringing and admissions arriving, I usually didn’t have time for anything else.

The patients I speak to, however, want so much more out of their end-of-life conversations.

One of the most common questions I heard was “How long do I have?” Indeed, about half of patients desire some knowledge about prognosis when discussing the end of life. They also wanted to know whether their symptoms — pain and nausea, for example — would ever go away, and what options would allow them to be at home during their final days. One woman even asked whether someone could set up her deathbed along the same beach where she had grown up. I frequently can’t answer these questions.

Yet even these potentially frustrating conversations aren’t that common: While 8 in 10 people of all ages think it is important to talk to their doctor about their end-of-life wishes, fewer than 1 in 10 report actually having had these discussions. But there are two participants in those end-of-life conversations: patient and doctor. Unless each realizes what the other wants, both risk coming away from those conversations feeling uncomfortable or sensing that things had not gone well.

Before I saw my elderly heart patient for his next visit, I came across the website of the Conversation Project, a group dedicated to helping people discuss their wishes for end-of-life care. Led by health professionals, media, clergy and others, the Conversation Project has published a “Starter Kit” to help patients and health professionals prepare for end-of-life conversations. The guide first asks patients to fill in the blank: “What matters to me at the end of life is ______.” Subsequent steps are based on that answer.

More resources for advance-care planning exist. A nonprofit called ACP Decisions has created videos to help physicians explain emotionally charged end-of-life concepts such as CPR, hospice and feeding tubes. At my hospital, we have used simulated conversations with patient actors to help residents approach the end-of-life conversation.

So at my next meeting with my patient, rather than beginning the discussion around his code status, I asked what mattered most to him. Over the next five minutes, he explained how his great-granddaughter in Ethiopia had just been born. The family was flying to America next month, presumably to see my patient for the last time. Even if it meant receiving compressions or shocks, he wanted to make sure he was alive to see that baby. He remained a full code until our next visit, which was two months later, after his family had left. At this point, he decided to revert to DNR. We are discussing hospice care now.

I no longer think that my first discussion with that patient was a failure. But it opened my eyes to how little I’d been listening. End-of-life discussions are opportunities to learn more, to start a conversation that we as doctors have been missing out on for quite a while. Once we listen enough to learn, maybe those “goals of care” discussions will start focusing on the goals of the patient, not the doctor.

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Working in Hospice Changed My Perspective on Death

“Like many physicians, I’d never considered that there might be more to death than an enemy to be fought.”

By

Tom was only forty when he arrived at Hospice Buffalo with end-stage AIDS. Unlike most of my patients, he was not surrounded by loved ones. Not a soul came to visit, ever. He was rather stoic, so I wondered if the absence of visitors was his choice rather than an indicator of his loneliness. Maybe that was his way of refusing to give death an audience.

I was puzzled but, wanting to respect his privacy, did not inquire. Tom’s emaciated body showed traces of once-chiseled muscles. He had kept fit and was still quite young, which gave me hope. In light of his age and physical conditioning, I thought that his body would be more likely to respond positively to life-prolonging treatment. Not long after he was admitted, I went to the nurse’s station and decreed, “I think we can buy Tom some time. IV antibiotics and fluids should do it.”

The charge nurse, Nancy, had been at Hospice Buffalo for much longer than I had. She knew her job, and everyone looked up to her. She was also not one to mince words. Still, her response took me by surprise: “Too late. He’s dying.”

I said, “Oh really?”

She replied, “Yep. He’s been dreaming about his dead mother.” I chuckled awkwardly—equal parts disbelief and defensiveness. “I don’t remember that class from medical school,” I said.

Nancy did not miss a beat. “Son, you must have missed a lot of classes.”

I was a thirty-year-old cardiology fellow finishing my specialty training while working weekends at Hospice Buffalo to pay the bills. Nancy was an exceptional veteran nurse who had limited patience for young, idealistic doctors. She did what she always did when someone was out of their depth—she rolled her eyes.

I went about my business, mentally running through all the ways modern medicine could give Tom another few weeks or even months. He was riddled with infection, so we administered antibiotics. Because he was also severely dehydrated, I asked for a saline drip. I did all I could do as a doctor to prolong his life, but within forty-eight hours, Tom was dead.

Nancy had been right in her estimation of where he was on the downward slope. But how could she have known? Was it just pessimism, the numbing effect of having watched so many people die? Was she truly using a patient’s dream as a predictor of life-span? Nancy had worked in hospice for more than two decades. She was tuned in to aspects of dying I knew nothing about: its subjective dimensions. How patients experienced illness, particularly dying, had mostly been ignored throughout my training as a doctor.

Like many physicians, I’d never considered that there might be more to death than an enemy to be fought. I knew about blind intervention—doing everything possible to keep people conscious and breathing—but had little regard for the way any given individual might wish to die, or for the unavoidable truth that ultimately death is inevitable. Because it had not been part of my medical education, I failed to see how the subjective experience of dying could be relevant to my role as a doctor.

It was ultimately the remarkable incidence of pre-death dreams and visions among my dying patients that made me realize how significant a phenomenon this was, both at a clinical and a human level. As a hospice doctor, I have been at the bedsides of thousands of patients who, in the face of death, speak of love, meaning, and grace. They reveal that there is often hope beyond cure as they transition from a focus on treatment to notions of personal meaning. As illness advances, grace and grit collide and bring new insight to those dying and their loved ones, insight that is often paradoxically life-affirming. This experience includes pre-death dreams and visions that are manifestations of this time of integration and coming into oneself. These are powerful and stirring experiences that occur in the last days or hours of life and that constitute moments of genuine insight and vivid re-centering for patients. They often mark a clear transition from distress to acceptance, a sense of tranquility and wholeness for the dying. Patients consistently describe them as “more real than real,” and they are each as unique as the individual having them.

These end-of-life experiences are centered on personal histories, self-understanding, concrete relationships, and singular events. They are made of images and vignettes that emanate from each person’s life experiences rather than from abstract preoccupations with the great beyond. They are about a walk in the woods relived alongside a loving parent, car rides or fishing trips taken with close family members, or seemingly insignificant details such as the texture or color of a loved one’s dress, the feel of a horse’s velvety muzzle, or the rustling sound of a cottonwood’s shimmering leaves in the backyard of a childhood home. Long-lost loved ones come back to reassure; past wounds are healed; loose ends are tied; lifelong conflicts are revisited; forgiveness is achieved.

Doctors owe it to their patients to incorporate this awareness into our practice. End-of-life experiences ought to be recognized as evidence of the life-affirming and inspiring resilience of the human spirit that drives them. They are proof of humanity’s built-in, natural, and profoundly spiritual capacity for self-sustenance and self-healing, grace and hope. They help restore meaning at end of life and assist in reclaiming dying as a process in which patients have a say. They also benefit those left behind, the bereaved, who get relief from seeing their loved ones die with a sense of peace and closure.

This subjective experience of dying is also a powerful reminder that beauty and love in human existence often manifest themselves when we least expect it. The patients who summon up comforting processes at life’s end are beset by symptoms of a failing body over which they have limited control. They are at their most frail and vulnerable, existing within suffering states of aching bones and hunger for air. Catheters, IVs, and pills may now be part of their every day, sometimes literally functioning as extensions of their bodies under the daily medical management that is their new and irreversible lot. They may experience various degrees of cognitive, psychological, and spiritual dissonance. Yet even as the inexorable march of time is taking its toll on their bodies and minds, many also have pre-death dreams and visions in the context of which they display remarkable awareness and mental sharpness.

Herein truly lies the paradox of dying: patients are often emotionally and spiritually alive, even enlightened, despite a precipitous physical deterioration. The physical and psychological toll of dying may be undeniable, but it is also what makes the emotional and spiritual changes brought about by end-of-life experiences border on the miraculous. Doing justice to end-of-life experiences means accounting for this paradox, one in which death and dying transcend physical decline and sadness to include spiritual awakening, beauty, and grace. Or, as the title character in the acclaimed Tuesdays with Morrie puts it, “Aging is not just decay, you know. It’s growth. It’s more than the negative that you’re going to die.” This is also true of the dying process, which often functions as a summing up, culmination, and capstone, an opportunity to recognize and celebrate our humanity in all its complexity and dignity rather than just as an ending.

Excerpted from DEATH IS BUT A DREAM by Christopher Kerr, MD, PhD and Carine Mardorossian, PhD. Published on February 11, 2020 by Avery, and imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2020 by William Hudson, LLC

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Does Marijuana Have A Place In Hospice?

A new study found that 87% of Americans support the use of medical marijuana as a treatment option for terminally ill patients.

By Kate-Madonna Hindes

As Americans continue to age, hospices are exploring new ways to bring peace and calm to the often slow and painful process of end-of-life care. According to the CDC, in 2015, an estimated 1.4 million individuals on Medicare were patients in a hospice setting.

Quadrupling in size in the last twenty years, hospices are investing in creating a patient-centric approach that dismantles beliefs that hospices are cold, and unfeeling institutions. From massage to aromatherapy, some hospices are offering new additions to their programs including music and integrating family into meaningful experiences. While many hospices are focused on offering a thoughtful quality of care, many end-of-life-care specialists are also advocating for marijuana.

MorseLife recently unveiled a 2019 study focused on advances in hospice care and found changing attitudes on medical marijuana. They cited that, “87% of Americans support the use of medical marijuana as a treatment option for terminally ill patients, with nearly three in five Americans (58%) expressing strong support.”

The American Academy of Hospice and Palliative Medicine recently shared a video on how hospices can integrate medical marijuana into care, heralding more change in the market to accepting marijuana as a part of a patient’s care plan.

Pathways Home Health advocates for marijuana in hospice care, stating:

“Marijuana is used in the hospice care setting to ease spiritual and existential suffering, with some studies showing an important therapeutic role for patients faced with the despair of a terminal illness, as well as the loss of function that accompanies it. A mild euphoria or sense of well-being can ease a patient’s mind, body and spirit as they come to terms with their fate.”

Stuck in political limbo

While some hospice programs are embracing medical cannabis, some are facing uncertainty about whether or not to allow medical marijuana, even when it’s legal inside their particular state. With an ever-expanding list of states that allow marijuana both medically and recreationally, hospices are taking an evidence-based, risk-management-forward approach to ensure they comply legally and ethically.

Changing attitudes are allowing for researchers to gain more insight and information regarding the role cannabis and CBD can both play in hospice and palliative care settings. Published in the Journal of Palliative Medicine, an October 2019 study focused on the responses of over 300 palliative care professionals from over 40 states on the use of medical cannabis. The study found “overwhelming support” for the use of medical cannabis in a hospice setting:

Regardless of legal status, hospice staff members were overwhelmingly in agreement that MC (medical cannabis) is appropriate for hospice patients to have access to and use.

Citing barriers such as legal status, clinical safety, and societal influence, the study believes opportunities exist to better support hospice providers and patients with education, research and policies that elevate the use of medical cannabis.

With new patients entering hospice every day and both clinicians and doctors looking to supplement old pain medicines with newer more effective treatments, marijuana will remain a top topic for years to come.

Complete Article HERE!

Many Americans say they want to die at home.

It’s not always easy to make that happen.

By Haider J. Warraich

Roger Kellison had Parkinson’s disease that was quickly progressing. He was a private man who eventually moved into his daughter’s house when he was unable to take care of himself.

“He had not come to our house to live,” Daniel Wallace, his son-in-law, told me. “He had come to our house to die. The last thing he wanted to do was die at a hospital.”

Roger Kellison was part of a striking trend: For the first time since the early part of the 20th century, more Americans are dying at home than in the hospital or a nursing home. This finding, included in a recent study by me and co-author Sarah Cross, is encouraging because the vast majority of Americans say they prefer to die at home. So this reflects that many more people are being able to achieve that goal.

But as more people die at home, it also means that much more responsibility falls on the shoulders of patients and their caregivers. Caregiver burden is a growing problem in America. As a doctor tending patients with heart failure, I am keenly aware of how hard managing care can be for both patients and family members.

Taking care of an ailing loved one can be exhausting physically and emotionally, and frequently caregivers lose sight of themselves. My study co-author used to work as a social worker and has seen many families struggle with managing a loved one at home. “Caregivers need to prioritize their own care,” she told me. “It isn’t selfish to take breaks, make time with friends, ask for help, look into respite options.”

After Kellison moved in with his daughter, he stayed mostly in the upstairs guest room, and for the last five months rarely, if ever, came downstairs. That physical separation was important for everyone.

“It was helpful that we delineated the house and our lives. We still went out and we still had people over,” Daniel Wallace said. “Sometimes he was part of that and sometimes he wasn’t.”

Making shared living space work is just one issue. If dying at home is important to someone, that person and their caregivers should think about — and prepare for in advance, if possible — other factors:

Perhaps most importantly, the person nearing the end needs to make clear that they want to die at home. Family, friends and medical teams need to know that. Physicians and nurses will frequently ask patients how they would like their end to be, particularly what types of intensive treatments they might or might not want. They rarely ask people where they would like to die, however.

Once at home, there are certain physical considerations worth noting: Many people have strong feelings about where in the house they would like to spend their last days — in a dark, quiet room, or looking out a window, or away from too much hubbub. Nearness to a bathroom is key. Sometimes, light remodeling, such as installing handrails in bathrooms or ramps, is helpful.

A person at the end of life will probably have feelings about who they want to spend time with — or who they don’t want — so it is important to discuss in advance who will provide caregiving, along with who might provide occasional backup for regular caregivers.

There are often community resources available as well, such as end-of-life doulas trained to care for the physical, emotional and spiritual needs of a dying person. Adaire Petrichor is one such doula. She said she “helps with rituals, ceremonies, legacy work and advice on nonmedical comfort care.”

Online resources are available through such organizations as Compassion & Choices. The Conversation Project can provide guidance for patients and their loved ones about what to expect in the final days.

Perhaps the most critical resource available for those wanting to die at home is hospice care. Hospice is covered by Medicare (and most other insurance) for patients with an expected life expectancy of less than six months. It is designed to help caregivers take care of a dying loved one at home with 24-hour call-in numbers to answer urgent questions, visits from hospice nurses, social workers and other staff. But home hospice does not provide full hands-on service, and caregivers still carry the bulk of the responsibility. While in many cases the care of the patient can be tougher than loved ones expect, most people find hospice guidance and support invaluable.

Wallace said hospice was key for taking care of his wife’s father after he moved in with them to die.

“Hospice was a way to bring a quality of life that he didn’t have before, because he couldn’t take care of himself and we couldn’t take care of him without hospice,” Wallace said. “If you need a wheelchair, they have that. If you need Haldol [an antipsychotic drug to treat end-stage delirium and agitation], morphine, they have it, and you can have it the next day.”

While the vast majority of hospice services are delivered at home, hospice care can also be provided in nursing facilities for dying patients who require more intensive medical care or don’t have other social supports.

Hospice is the primary reason more Americans are able to die at home today. Yet, only half of Americans who die receive hospice help. One reason may be that some people don’t ask for it because they think it is sending a depressing message to their ailing loved one or admitting what they may not want to acknowledge — that the person is in their last days.

“The obvious misconception is that it’s a death sentence,” Wallace said. But “it really is a quality-of-life sentence.”

Outside remote regions, most areas have multiple hospice agencies from which to choose.

Agencies can differ in how often nurses visit, what they might offer in crises and what equipment they provide, including hospital bed, oxygen tanks, wheelchairs. It is worth having a discussion about the support they’ll provide and other options before committing to a particular hospice provider.

With advances in public health, medicine and longevity, people now live longer with disabilities. Death is not just the terminal event in our mortal lives, but the final word of a story that can often take years to unfold.

Intermixed with periods of relative stability can be moments of terror as someone hits their final days. Physicians and other health-care providers need to prepare patients and families for these health shocks, such as worsening breathing for a patient with heart or lung disease or a pain crisis for someone with cancer.

Calling 911 when an end-of-life crisis hits initiates a cascade that can often lead to the hospital. This might be necessary if a patient has symptoms that caregivers at home feel unable to manage. For that reason, Cross said, “I recommend not making promises to a loved one such as ‘I promise I’ll always take care of you at home.’ When it becomes too much to manage at home, I’ve seen many caregivers racked with guilt for having ‘broken a promise.’ ”

Some endings can take a much more erratic course, common for those with heart or lung disease. This might be one reason our study showed that patients with cancer are more likely to be able to die at home than those with heart or lung disease.

One morning, a year after his father-in-law had moved in, Wallace went upstairs to check on him and unexpectedly found he had died.

“He did not present himself as dying when it happened,” he said. “We weren’t on death watch or anything like that.”

Some caregivers I have talked to feel uncomfortable with the idea of their loved one dying at home. Even though death has occurred at home for eons, the 20th century interrupted that historical legacy, and for many, it is a novel concept.

But for many, fulfilling a loved one’s wish to die at home provides a fitting and natural end to the story of that person’s life.

When I asked Wallace whether he viewed his house differently after his father-in-law died in it, he said: “It deepens my experience of being alive, to be in a house where someone has died. It’s a remarkable thing.”

Complete Article HERE!