Category: Caregiving

Posted on

Beyond the Bedside

— A Hospice Nurse Works to Change the Conversation on Death

By Jim Parker

Misconceptions about and limited awareness of hospice are among the industry’s largest headwinds, a problem that one hospice nurse in California is working to solve.

Julie McFadden entered the nursing profession 16 years ago, starting her career in intensive care units. After about eight years in the ICU, she “took the leap” into hospice nursing and hasn’t looked back.

More recently, McFadden has begun to take her passion for hospice care beyond the bedside. She has been releasing educational videos on social media platforms and YouTube in which she discusses key aspects of hospice care, terminal illness, caregiving and the dying process. She has more than 47,000 subscribers on YouTube alone, with some videos attracting tens or hundreds of thousands of viewers.

McFadden is also the author of the forthcoming book, Nothing to Fear: Demystifying Death to Live More Fully, slated for release in June.

Hospice News sat down with McFadden to discuss her educational mission, the knowledge gaps she is working to fill and how common beliefs and attitudes about death impact patients and families.

Hospice nurse, author and educator Julie McFadden

You’ve said you wanted to change the way we think about death and dying. What in your view does need to change?

It seems like everybody, including other health care workers sometimes, thinks that death is the worst possible outcome. So let’s avoid it at all costs, even though it’s inevitable for all of us. And I think that’s a disservice.

The advances we made medically had been amazing, and they do keep us alive much longer. We live better, healthier lives. That’s all amazing. But I think we try to ignore the fact that there is an end point to our lives, so we avoid it at all costs. We think it’s the worst possible thing that could happen, and I think that causes a lot of undue suffering. And suffering to me is far worse than death.

I want to help people see — if death is inevitable — why and how we can better prepare ourselves, so it doesn’t have to be this horrific, traumatic thing.

What was the transition like when you went from the ICU to hospice care? Was there a degree of culture shock? How did you acclimate yourself to that environment?

Yes, there was definitely a degree of culture shock. I had been very unhappy as an ICU nurse for many years, and I just sort of stuck with it thinking it was a “me” problem — that I just wasn’t meant to be a nurse, and I wasn’t a good nurse. There must be a reason I don’t like this. And then when I made the change, I was kind of healing from that.

I do feel like it was kind of traumatic to be an ICU nurse, at least for me. Hospice was a slower pace. I was in people’s homes. There was a lot of autonomy, which is good and bad. And it just took me time to see that I didn’t have to hurry up and care. Like a lot of times in the ICU, it felt very rushed, and I hated that feeling. I felt like I couldn’t care as much as I wanted to, because I was always in a hurry and very task oriented.

In hospice, it didn’t feel like that to me. So it was just a transitional shift. The first year I was getting used to that. And then as I watched all these people die what I would call a natural death, seeing how the body was really taking care of that person, with or without my help, was so fascinating to me. That’s what really got me thinking like, wow, this is a whole new ballgame that I never even knew was there.

Even as an experienced ICU nurse, I feel like I didn’t understand the scope of how our bodies really take care of us, even at the end of life.

Can you expound on that a little bit? What are some of the ways that our bodies take care of us?

For example, almost everyone wasn’t hungry, wasn’t eating and drinking, and they were sleeping a lot of the time. I would hear from my hospice doctors that this is happening a lot of the time because their calcium levels are rising. When you start getting towards the end of life, your body knows it. So it starts like turning off that hunger and thirst mechanism in the brain, because it knows that it doesn’t really need that anymore.

Your body just needs almost like a cocoon. So although there may be some symptoms, because of the disease you’re dying from — it’s not all roses and daisies — in the actual act of dying, the body will start changing chemically. Calcium levels rise; certain things will kick in, and the more that happens, your body can go into ketosis or it can release endorphins or stall pain and give you a euphoric feeling. So there’s many things that just naturally happen.

Could you say more about why the education you’re doing is necessary? What is the knowledge gap you’re trying to fill?

Generally speaking, we have a lot of holes in our health care system. Health care workers don’t have a lot of time. Not everyone has the time to really sit down and educate about a difficult topic like end of life, or the fact that they’re even getting close to the end of life. That’s a difficult thing to bring up.

We’re missing the ability to take that time and space to allow people to hear what’s truly going on and educate them about that. That’s a big missing piece.

In my nursing education, I do not think I learned about death. It was always about keeping people alive. It seems like almost all health care education is about how we keep people alive. So there’s a gap there too, even with other health care workers. So I just felt like, “Why not try to educate the masses in a general way just so they have an idea of what’s going on?” It’s also giving them a way to openly discuss things.

As an ICU nurse, I didn’t know some of the things that I know now as a hospice nurse. There’s a lack of knowledge among health care workers, and definitely lack of knowledge among people who don’t work in health care, which is not their fault. It’s just that we don’t teach or talk about what the end of life is like, and that’s what I’m trying to change. We do need to start talking and planning for it.

I noted some of the some of the videos were sponsored by [the virtual mental health care platform] Betterleave. How did that relationship come together?

I don’t have a manager or an agent or anything like that. Companies just come across my videos. I don’t mind coming into relationship with companies as long as I feel like it’s something I would get behind whether I was paid for it or not.

BetterHelp to me is like such a great concept. So they reached out to me, and because I’m into them, I said, “Yeah, let’s partner.” I have intermittent sponsorships from a company called the Macy Catheter, and then occasional other sponsorships.

You’re still working as a hospice nurse. Is your employer giving you any feedback on your videos? Have they seen them?

I’ve done it for three years now, and I think I was keeping it pretty quiet. I had an article that went really viral almost three years ago, and that’s when they called me into the office. They were happy for me. I love my employer. But we had to talk about what was going on and disclose it to HR to make sure that everything’s Kosher.

I have guidelines I have to follow, which I do as far as HIPAA regulations and not talking about where I actually work. But overall, they’re super supportive.

Complete Article ↪HERE↩!

Posted on

Dying and Other Stuff

— A Practical Perspective on Good Deaths

Death is considered taboo in the Western world and many other cultures. With the world’s population aging rapidly, we cannot afford to turn a blind eye toward the process of dying. We owe it to ourselves and our loved ones to advocate for the tools, knowledge and spaces necessary to prepare for a good death.

By Ranjani Iyer Mohanty

At the age of 87, my father passed away from cancer in Calgary, Canada. He had multiple myeloma, an illness that made his bones very fragile. He was bedridden for the last nine months of his life. Instead of hospice, he wanted to spend his remaining time at home for several reasons. We could be with him 24/7; he could be in familiar surroundings, eat his favorite foods and watch his favorite shows; and we could retain control over his care and manage it according to his wishes.

My mother, sister and I supported his decision. My 80-year-old mother managed the home and cooking. I scheduled appointments and managed his day-to-day care. Since this was during the COVID pandemic, my sister could work from home and would pop up between meetings to feed him. My sister and I would alternate doing night duty. It was the best of times; it was the worst of times. It brought us all closer; it was frightening and exhausting.

In the final days, I felt myself woefully unprepared to guide a loved one through this inevitable journey in a gentle and reassuring manner. I wondered why our society and culture do not offer us more support. Death needs to be made into a less traumatic and more normalized process.

We are woefully underprepared…

Globally, the population is aging; the number of people over 80 is expected to increase dramatically from 137 million in 2017 to 909 million by 2100. In Canada, more than 20% of the population is over the age of 65. In the US, that number is approaching 18%.

Some 61 million people the world over died in 2023. That number is expected to reach 120 million annually by the end of this century. The upcoming decades will see the steepest rise in the number of annual deaths in possibly all of our human history. Death should be an important public health topic — both globally and nationally.&

For the experience of birth, there is an abundance of support and enthusiasm. There are informational books like the classics What to Expect When You’re Expecting and Pregnancy, Childbirth, and the Newborn and Ina May’s Guide to Childbirth. More are published each year. Prenatal classes are found in numerous hospitals and community centers. Some stores cater specifically to new parents, offering necessary as well as cute items. There are celebrations like baby showers. Grandmothers and mothers and aunts and sisters and friends share their excitement, wisdom and help. There are hospitals and obstetricians. And there are doulas and midwives.

For the experience of death, we are sad, frightened and alone. There’s not enough support, even though experiencing death — either others’ or even our own — is as much a part of our existence as birth. In fact, one could argue that death is the more universal experience. Yes, we’re all born, but we don’t even remember it later. In contrast, many of us are even conscious and coherent in our final days before death. Apparently, just before he died, Oscar Wilde had the wherewithal to say, “Either that wallpaper goes or I do.” While not all of us give birth, we all die. We need to be better prepared for death.

…but we don’t have to be

We don’t do too badly in terms of books on the subject of death. While there’s not yet a What to Expect When You’re Dying, there are several excellent books on the practical aspects of death: Atul Gawande’s Being Mortal; Sherwin Nuland’s How We Die; Margaret Rice’s A Good Death; Katy Butler’s The Art of Dying Well; and Sallie Tisdale’s Advice for Future Corpses. Such books can help to introduce, inform and normalize the concept. They can help us see death not just as something to avoid, but as something to prepare for.

There are no classes on how to die well, but there could be. Just like how we have prenatal classes, we could offer pre-death — or to be parallelly Latin, “premortem” — classes, for anyone experiencing death. Premortem classes would be taken when we know death is impending, or even beforehand to motivate us to make the most of our remaining time. To make them accessible, these classes could be offered in hospitals and community centers just like prenatal classes.

True, death means the loss of a person instead of a gain. But isn’t that even more of a reason to have a celebration before dying, to appreciate what is precious while we still have it? There is rarely a pre-death celebration, particularly in the West. End-of-life celebrations can bring the dying and their loved ones together to reminisce, reaffirm and say goodbye. In some communities in South India, the 60th and the 80th birthdays have long been celebrated with special fanfare. There is a puja (prayer) for the guest of honor, followed by a feast and party attended by a large number of family and friends. The Western world is now thinking of “living funerals” — or the happier term, “celebrations of life.” Perhaps we should embrace them wholeheartedly.

Preparation for death could also involve a bit of a shopping-and-social experience. There are already “Death Cafés” where people meet in a café to talk about death. There is potential to expand this to a full-time, accessible space with books on philosophy, faith, how to have a good death and how to guide loved ones through the process. There could be support group meetings for the dying as well as their companions. Conversation groups on a variety of death-related topics and lectures from experts could offer those premortem classes. Given the growing demand foreseen over the course of this century, this has the scope to develop into a purposeful space for preparing for death.

Professional care shouldn’t end at the hospital

While bookstores and cafes can offer space to talk about death, there is still a demand for experts to coach us through the process. There are palliative care doctors, but only in cases of incurable diseases and not for cases of regular deaths. Hospices are few in number and are only open to those with a terminal illness and a prognosis of less than six months. As a society, we need to consider and plan spaces where people — especially those who are alone — can die in comfort and with easy access to professional expert care.

Over the past 20-some years in the US, the percentage of deaths at hospitals has decreased from 48% to 35.1%. The percentage of deaths at home has increased from 22.7% to 31.4%. In a 2013 survey in Canada, 75% said they would prefer to die at home. Governments too prefer to have us pass away at home, as it lessens the burden on nations’ hospitals and healthcare systems. Passing away at home may be what most of us want — in a familiar place, surrounded by our memories and family. How nice it would be if we could also have a death expert on hand. Just as we have a midwife to assist us in the birthing process, we could have a midwife to help us in the dying process. Surprisingly, such people exist.

A death midwife or doula is simply defined as a person who assists in the dying process. There are already death midwife associations in several countries (e.g., Canada, US, UK), such as the International End-of-Life Doula Association (INELDA). Death midwives can perform a variety of services. Many provide information and logistical assistance, such as death planning and funeral planning.

I envision a broader and more intimate role. I see a death midwife as similar to a birth midwife, someone who is very hands-on and who has a link with a doctor. A comforting, compassionate and yet objective presence who has helped many die well. It would involve assisting with physical as well as emotional end-of-life care. Just as the birth midwife helps both the mother and the child, I see the death midwife as helping both the dying and their companions. Death midwives can give guidance in accordance with the wishes of the family and, most importantly, in accordance with the wishes of the dying. They can hold our hand till the gate.

We owe it to ourselves

Given the unprecedented numbers that will be dying in the coming decades, it would be wise for societies at large to treat death as a public health issue. And given that none of us is likely to escape death, it behooves us individually to advocate for support systems – such as informative literature, preparatory classes, conversation groups, dedicated products and spaces, and accessible death experts and midwives. A good death may well be possible if we prepare to evolve in such a manner. We owe it to our parents, ourselves and to our children.

Complete Article ↪HERE↩!

Posted on

How Death Doulas Can Help Hospices Improve Health Equity

By Holly Vossel

End-of-life doulas can help hospices’ efforts to improve health equity in hard to reach settings while also improving quality in the last days of life.

The quantity and quality of patient visits during the last days of life is an important quality measure for hospice providers. Having doulas at the bedside during the last days of life has positively affected hospice quality outcomes, including those among underserved populations, according to Diane Sancilio, director of counseling and support at Gilchrist Cares.

The home health and hospice nonprofit provider began offering end-of-life doula services in 2010 and currently has 75 of these trained volunteers, Sancilio said. Doulas can help improve hospice’s ability to support patients and families during their most vulnerable final moments, she stated.

“We have round-the-clock doulas that can be available when our clinical staff are not,” Sancilio said. “They can come sit with a person for hours when a family member or caregiver can’t be there so their loved one does not die alone. There is absolutely an impact. We do see the impact of having end-of-life doulas and the care that families experience in those last couple of days.”

The role of doulas in hospice care

Patients and their families often need greater support in the final days of life, Sancilio said. Doulas can help hospices to reach these patients further upstream in a variety of ways, including increased touch points with families at the bedside, she added.

Hospices have various models of end-of-life doula support including volunteer-based services, contract-based services and some include these professionals as part of their interdisciplinary team.

End-of-doulas often do not face the same time constraints as hospice providers and can stay with the patient longer, according to Tracie Taylor, nurse and certified end-of-life doula partnering with Heart to Heart Hospice. During that time doulas help address their nonmedical and psychosocial needs, including anxiety, guilt and fear of death, Taylor stated. 

“End-of-life doulas can sit with patients and families for as long as needed, staying continuous hours,” Taylor said. “By educating people and helping them confront their own mortality in a healthy, safe environment we can eliminate some of that regret at death.”

Heart to Heart has been growing its base of end-of-life doula providers in recent years, including hiring more of these professionals in its Houston and Indiana service regions.

Among the factors fueling these services is their impact on quality, according to Shana Sullivan, chaplain and end-of-life doula at Heart to Heart Hospice. Doulas are trained in a variety of areas in the dying process that can help support terminally ill patients and their families during the last days of life, Sullivan said. 

In addition to assisting families in funeral and memorial service planning, vigils, legacy work and providing anticipatory grief counseling, doulas are trained in communicating on sensitive topics, she explained. They can also have skill sets in music and aromatherapies, reiki, yoga and meditation, that can aid in symptom burden among patients, Sullivan added.

“Doulas have a lot of various skill sets they can bring to the table,” Sullivan told Hospice News. “What makes doulas a needed asset to a hospice team is [that] they bring a modality of support [and] provide lots of quality time for the family member that another care team member might not be able to do. That’s invaluable to a family.”

Doulas can also help hospices improve a hospices’ ability to deliver goal concordant care among rural and culturally diverse patient populations, according to Taylor.

“Rural and diverse areas can be a challenge for other providers,” Taylor said. “Respecting our patients for their beliefs, roots in their communities and diversity of their area are all part of how Heart to Heart honors those we serve. Public outreach and community education is key in rural areas, [and] knowledge is part of life planning and dignity.”

Doulas closing disparity gaps in the last days of life

Some of the most underserved groups with health care disparities include people of color; incarcerated, seriously ill seniors; rural populations and the LBGTQ+ community, among others.

Doulas can help hospices to better understand the broad range of unmet needs and barriers to support during the final stages of life among underserved populations, according to Eric Flotow, a certified end-of-life doula. Flotow has firsthand experience of providing hospice care to incarcerated individuals.

“I’ve seen many things that occurred in the Department of Corrections that still haunt me today within the hospice setting and the way that people were treated,” Flotow told Hospice News. “That brought about this recognition of this major injustice that is just continuing to go unaddressed and challenges from a humanitarian perspective. Death doulas can help create safe spaces, provide counsel and help people heal and die well. We bridge the gap between death and hospice care at the end of their life journey.”

Misunderstandings, fear and mistrust of the health system also represent main barriers to care among underserved groups, according to Lauren Carroll, founder of The DeathWives. The Colorado-based organization provides death doula certification and training, along with doula referral assistance.

End-of-life doulas can break down common barriers among underserved populations, as they often have deep roots in various community groups and a unique understanding of different cultures, beliefs and death processes among diverse populations, Carroll said.

The end-of-life doula workforce is becoming increasingly diverse, according to Carroll. A growing mix of men, women, transgender and cisgender individuals have become interested in death doula work, along with people from diverse cultural and ethnic backgrounds, she added.

Having a doula’s insight and ability to forge community relationships is invaluable to reducing hospice disparities among underserved populations, she stated.

“A lot of underserved people don’t have representation in a funeral home or hospice setting,” Carroll said. “The greatest thing about a death doula is that we can help bridge that gap of understanding. A lot of our work is advocating rights and wishes that people have and providing education. People feel more comfortable working with people in their own community, which doulas often are. It’s easier to have a communication relationship with them during a very vulnerable time versus health workers they might not see themselves in.”

Complete Article ↪HERE↩!

Posted on

Terminal Cancer

— What Matters to Patients and Caregivers

By Megan Brooks

What’s most important to patients with terminal cancer and their caregivers?

New research found that patients and caregivers both tend to prioritize symptom control over life extension but often preferring a balance. Patients and caregivers, however, are less aligned on decisions about cost containment, with patients more likely to prioritize cost containment.

“Our research has revealed that patients and caregivers generally share similar end-of-life goals,” with a “notable exception” when it comes to costs, first author Semra Ozdemir, PhD, with the Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore, told Medscape Medical News.

However, when patients and caregivers have a better understanding of the patient’s prognosis, both may be more inclined to avoid costly life-extending treatments and prioritize symptom management.

In other words, the survey suggests that “knowing the prognosis helps patients and their families set realistic expectations for care and adequately prepare for end-of-life decisions,” said Ozdemir.

This study was published online in JAMA Network Open last month.

Patients with advanced cancer often face difficult decisions: Do they opt for treatments that may — or may not — extend life or do they focus more on symptom control?

Family caregivers, who also play an important role in this decision-making process, may have different care goals. Some research suggests that caregivers tend to prioritize treatments that could extend life, whereas patients prioritize symptom management, but it’s less clear how these priorities may change over time and how patients and caregivers may influence each other.

In the current study, the researchers examined goals of care among patients with stage IV solid tumors and caregivers during the last 2 years of life, focusing on life extension vs symptom management and cost containment, as well as how these goals changed over time.

The survey included 210 patient-caregiver pairs, recruited from outpatient clinics at two major cancer centers in Singapore. Patients had a mean age of 63 years, and about half were men. The caregivers had a mean age of 49 years, and almost two third (63%) were women.

Overall, 34% patients and 29% caregivers prioritized symptom management over life extension, whereas 24% patients and 19% caregivers prioritized life extension. Most patients and caregivers preferred balancing the two, with 34%-47% patients and 37%-69% caregivers supporting this approach.

When balancing cost and treatment decisions, however, patients were more likely to prioritize containing costs — 28% vs 17% for caregivers — over extending life — 26% of patients vs 35% of caregivers.

Cost containment tended to be more of a priority for older patients, those with a higher symptom burden, and those with less family caregiver support. For caregivers, cost containment was more of a priority for those who reported that caregiving had a big impact on their finances, those with worse self-esteem related to their caregiving abilities, as well as those caring for older patients.

To better align cost containment priorities between patients and caregivers, it’s essential for families to engage in open and thorough discussions about the allocation of resources, Ozdemir said.

Although “patients, families, and physicians often avoid discussions about prognosis,” such conversations are essential for setting realistic expectations for care and adequately preparing for end-of-life decisions, Ozdemir told Medscape Medical News.

“These conversations should aim to balance competing interests and create care plans that are mutually acceptable to both patients and caregivers,” she said, adding that “this approach will help in minimizing any potential conflicts and ensure that both parties feel respected and understood in their decision-making process.”

Managing Unrealistic Expectations

As patients approached the end of life, neither patients nor caregivers shifted their priorities from life extension to symptom management.

This finding raises concerns because it suggests that many patients hold unrealistic expectations regarding their care and “underscores the need for continuous dialogue and reassessment of care goals throughout the progression of illness,” Ozdemir said.

“This stability in preferences over time suggests that initial care decisions are deeply ingrained or that there may be a lack of ongoing communication about evolving care needs and possibilities as conditions change,” Ozdemir said.

Yet, it can be hard to define what unrealistic expectations mean, said Olivia Seecof, MD, who wasn’t involved in the study.

“I think people are hopeful that a devastating diagnosis won’t lead to the end of their life and that there will be a treatment or something that will change [their prognosis], and they’ll get better,” said Seecof, palliative care expert with the Supportive Oncology Program at NYU Langone Health’s Perlmutter Cancer Center in New York City.

Giving patients and caregivers a realistic understanding of the prognosis is important, but “there’s more to it than just telling the patient their diagnosis,” she said.

“We have to plan for end of life, what it can look like,” said Seecof, adding that “often we don’t do a very good job of talking about that early on in an illness course.”

Overall, though, Seecof stressed that no two patients or situations are the same, and it’s important to understand what’s important in each scenario. End-of-life care requires “an individual approach because every patient is different, even if they have the same diagnosis as someone else,” she said.

Complete Article ↪HERE↩!

Posted on

Cancer patients often want ‘one more round.’

— Should doctors say no?

Studies show that when cancer returns, patients are often quite willing to receive toxic treatments that offer minimal potential benefit.

By by Mikkael A. Sekeres, MD

My patient was in his early 30s and his leukemia had returned again following yet another round of treatment.

He was a poster child for the recently reported rise in cancer rates in the young, and had just asked me what chemotherapy cocktail I could devise for him next, to try to rid him of his cancer.

I hesitated before answering. Oncologists are notorious for always being willing to recommend to our patients one more course of treatment, even when the chances of success are negligible.

One grim joke even poses the question, “Why are coffins nailed shut?” The answer: “To keep oncologists from giving another round of chemotherapy.”

This unflattering stereotype is unfortunately backed by data. In one analysis of patients with a cancer diagnosis treated at one of 280 cancer clinics in the United States between 2011 and 2020, 39 percent received cancer therapy within 30 days of death, and 17 percent within two weeks of dying, with no decrease in those rates from 2015 to 2019.

My patient had received his leukemia diagnosis five years earlier, and initially, following chemotherapy, his cancer had entered a remission. He and his parents were farmers from Latin America and relocated at the time to the United States to focus on his treatment. When the leukemia returned after a year, he underwent a bone-marrow transplant, and that seemed to do the trick, at least for a while.

But then it reared its ugly head a couple of years later, and we worked to slay it with yet more chemotherapy and another transplant.

That victory was short-lived, though, and multiple rounds of unsuccessful treatment later, here we were. The last course had decimated his blood counts, landing him in the hospital with an infection, a bad one that he had barely survived.

Does it help patients live longer or better?

Giving chemotherapy toward the end of life would be justifiable if we benefited our patients by enabling them to live longer, or live better. While that’s our hope, it often isn’t the case.

Other studies have shown that patients with cancer who receive treatment at the end of life are more likely to be admitted to the hospital and even the intensive care unit, less likely to have meaningful goals-of-care discussions with their health-care team, and have worse quality and duration of life.

Recognizing this, the Centers for Medicare & Medicaid Services has identified giving chemotherapy within two weeks of death as a poor-quality indicator that may adversely affect payments to hospitals. As a consequence, cancer doctors are discouraged from offering treatment to patients at the end of life, and can get in trouble with hospital administrators for doing so.

Despite the CMS measure, though, over the past three years the percentage of patients treated at the end of life hasn’t changed much, with one recent study actually showing an increase in patients treated.

Why do we do it? Perhaps optimism is part of our nature, and what draws us to a career in oncology. I focus on the positive, and that may actually help my patients. Other studies have shown that optimism in people with cancer is associated with better quality of life, and even longer survival.

And perhaps the data on giving chemotherapy close to a person’s last days on Earth, and the CMS quality metric, are unfair, and insensitive to the realities of how doctors and patients make decisions.

I stared back into the eyes of my young patient and then into those of his father, who was about my age. He looked kindly, with a thick, bushy white mustache, a red tattersall shirt, and work jeans. This man adored his son, accompanying him to every appointment, and always warmly clasped my right hand with both of his in thanks for our medical care — a gesture I felt unworthy to receive, given my inability to eradicate his son’s leukemia.

If our roles were reversed, how would I react if my son’s cancer doctor told me that the option for more chemotherapy was off the table, as CMS recommends, given the less than 10 percent chance that it would work, and the much higher likelihood that it could harm?

Wouldn’t I demand that the doctor pursue any and all means necessary to save my son’s life? Patients often do, and studies have shown that patients with cancer that has returned are quite willing to receive toxic cancer treatments that promise minimal potential benefit.

We discussed giving another round of chemotherapy, though I told my patient and his family that I was reluctant to administer it given the vanishingly slim chance that it would help. We also talked about my patient enrolling in a clinical trial of an experimental drug. And finally, we talked about palliative care and hospice, my preferred path forward.

“You’ve given us a lot to think about,” my patient told me as he and his family got up to leave, even smiling a bit at the understatement. His father came over to me and clasped my hand warmly, as usual.

But a couple of days later, despite how well he looked in clinic, my patient developed an infection that landed him in the intensive care unit. If I had given him chemotherapy, we would have blamed the treatment for the hospitalization.

But the cause actually lay with his underlying cancer, which had compromised his immune system, making him more vulnerable to infections. This time, my patient became sick enough that he decided enough was enough, and he accepted palliative care.

For many of my patients at the end of life who doggedly pursue that “one more round” of chemotherapy, a hospitalization becomes the sentinel event convincing them that the side effects of treatment just aren’t worth it anymore. It’s then no wonder people die so soon after their final treatment and time in the hospital.

It isn’t justifiable to give people with cancer chemotherapy when it is futile, just to be able to say “we tried something.” That’s what the CMS quality metric is trying to prevent. But in doing so, it shouldn’t interfere with a patient’s opportunity to come to that decision themselves.

Complete Article ↪HERE↩!

Posted on

As doctors, we are failing to put patients’ needs first, causing harm at the end of life

— Doctors including Zachary Tait and Rupal Shah, and recently bereaved readers Jo Fisher and Rebecca Howling, respond to Adrian Chiles’s column on how his father spent two of the last days of his life alone and distressed in A&E, for no good reason

‘As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors.’

My condolences to Adrian Chiles on the death of his father. His column describing the futility of his father’s last “precautionary” trip to A&E (3 April) highlights a rising challenge of the ageing population. As health and social care services collapse, the harms and indignities of hospital admission increase, especially for those least able to advocate for themselves. As a junior doctor working in A&E, I loathed watching frail, mostly older people languish on trolleys in corridors, receiving substandard treatment that they didn’t want and were unlikely to benefit from. This is now the norm in every hospital I’ve been to.

A 2014 study showed that more than a quarter of hospital inpatients die within a year. The risk, perhaps unsurprisingly, increases with age. It is our responsibility as clinicians to have difficult and frank conversations with patients ahead of time; to be pragmatic, realistic and kind in our decision-making. Unfortunately, lots of this comes under “planning for the future”, which tends to slip down the to-do list during a crisis. It is the single most rewarding part of my work to have the time and opportunity to make care plans with patients, to know what matters most to them, and to stop the “shrugs” that Chiles faced at every turn. But medicine-by-protocol is quicker and cheaper than thought and pragmatism, so as resources are stretched ever further, it may continue to flourish. I am so sad for Peter Chiles’s distress, and so grateful that his son uses his voice to call attention to it.
Zachary Tait
Manchester

I have been a GP partner in Battersea, London, for 20 years. Unfortunately, Adrian Chiles’s opinion piece absolutely resonates. As clinicians, we are now taught to prioritise “safety” over all other considerations – despite the dangers inherent in doing so. Really, we are often protecting ourselves more than we are protecting our patients – an inadvertent side-effect of our unforgiving regulatory system.

We doctors are behaving as “artificial persons” who represent the healthcare system, and not as moral agents who have a duty to create meaning with our patients. We urgently need to move into a moral era of medicine – one that rejects both the protectionism of the past and the reductionism of the current context, which so often results in the cruelties and inefficiencies that Chiles describes.
Rupal Shah
Co-author, Fighting for the Soul of General Practice – The Algorithm Will See You Now

Adrian Chiles’s article stirred my thinking, as I have been on a similar journey. My husband died two weeks ago, having been advised that he had three months to live. This proved to be the case. With the Hospice at Home service, the NHS was truly wonderful. He died, however, with morphine slowly killing him. This could have been prevented if an assisted dying law was in place. One of the nurses said that what we were doing was cruel.

We were able to resist a possible hospital admission for chest pains by having what is called a ReSPECT document signed by our GP for “do not resuscitate”, and because we had an advance directive, dated 2022, that had been placed with the GP and was on his medical records. This made the whole process so much easier for us, but also for the various wonderful medics. Parliament needs to update our laws to align with so many in this country who wish for greater clarity and support Dignity in Dying.
Jo Fisher
Brampton, Cambridgeshire

In response to Adrian Chiles’s article, and having recently lost my own father, the best advice I can offer anyone is to make sure you have power of attorney in place for your parents. That is the way you can ensure that you have the power to override the decisions of medical staff who, while acting with the best intentions, will not know your parents as well as you do and may not make the decision that is best for them, or what they would have wanted. Having a power of attorney in place is more important than a will, in my view, because it enables you to help your living parent and ensure that their wishes are complied with. In my father’s final days, I was asked numerous times: “Do you have power of attorney?” I was very relieved to be able to answer: “Yes.”
Rebecca Howling
Toft, Cambridgeshire

As the daughter of an elderly parent, I very much understand the need for A&E avoidance, to cause least distress. No doubt waiting haplessly alone for many hours hastens demise. However, as a GP, I know that the huge increase in litigation over the last 20 years is a very real threat to doctors’ livelihoods. Even a simple complaint from a patient or their family can cause weeks, months, sometimes years, of stress to a health professional. Ruminating over every decision, every action or inaction, every justification, is enough to give us a heart attack – or worse, to make us follow in the footsteps of Paul Sinha and Adam Kay and quit the profession for a more peaceful existence.
Name and address supplied

Dear Adrian, I am so sorry that this happened to your dad. Sadly, it is a story repeated again and again. I am what is termed a “late career” doctor (over 55), and I recently transitioned from working as an emergency consultant to become a GP working in aged care. Over my 30-year career, mainly in emergency and other hospital specialities, although including a significant period in palliative care, I slowly came to appreciate that the way we have set up our emergency system doesn’t serve older people at all, and the frailest elderly are generally so poorly served that transferring them almost inevitably makes things worse.

My residents (200 across five aged care facilities) all have discussion and documentation of whether they should go to hospital and under what circumstances. The staff know to call me if there is any uncertainty, day or night. I do lots of family meetings so relatives can feel confident that the right decisions will be made. I love looking after old people and ensuring they get the best care that is right for their individual circumstances.

I firmly believe that aged care in particular is a GP subspecialty of its own. Too often care is fitted into lunch breaks and “on the way home” visits, and devolved to phone services out of hours. This is no way to treat our oldest and frailest, who deserve so much better. Again, I am so sorry.
Fiona Wallace
Sheffield, Tasmania, Australia

I read Adrian Chiles’s article about his father’s experience with empathy. My own father led a district health authority, with many hospitals under his care. He was intensely proud of the NHS, but in his 90s he was very clear that he didn’t wish to die in hospital or even to be admitted again unless absolutely essential. If he had an infection, he would be treated at home. Should it worsen and Dad die, it would be in his own bed. As a family, we listened. I was caring for him and know it took a huge weight off Dad’s mind to know that he need not dread the ambulance or the bewilderment of a strange place. Too many elderly people die in the back of ambulances and in A&E. Let those who are able to do so make informed choices about their end of life. It is a great comfort to them.
Dr Jane Lovell
Ashford, Kent

Adrian Chiles is correct that decisions about sending frail and elderly patients to hospital can be due to doctors being risk-averse. Doctors face a double jeopardy from the General Medical Council, who can take their livelihood, and the legal system if things go wrong.

Not all families can accept when beloved elderly relatives have reached the end of their life. Some people have unrealistic expectations about what healthcare can achieve in frail patients, and push for investigations and treatments even when it seems unlikely to affect the final outcome. If these are not performed, doctors can be accused of negligence or ageism. Most doctors would like less invasive healthcare at the end of life for themselves and their own families than they routinely offer to patients.

I would encourage everyone to write an advance directive or “living will” outlining how they would like to be treated in the event of their health deteriorating. I would also suggest giving a trusted person power of attorney for healthcare. These can be very helpful in reducing incidents like the one described in the article.
Dr Stephen Docherty
Consultant radiologist, Dundee

I would like to express my condolences to Adrian Chiles on the death of his father. I can empathise with him on many levels. I too lost my father recently in not dissimilar circumstances. I am a practising GP, a former medical director of an out-of-hours GP service, and now spend most of time as a management consultant trying to influence change in the NHS to stop incidents like this happening.

When I talk to clinicians and managers, I am always humbled by their devotion despite the pressures they work under. In my current assignment, over 32% of clinicians feel they are burnt out, and many more express intense frustration with the low-value clinical work they undertake. There is a limit to how much the system and the individuals who prop it up can give. The demand for care is rising every year.

I suspect that the GP who decided to send Adrian’s father to A&E without seeing him was under pressure to make a number of decisions that night. Given more choice, I’m sure they would have prioritised cases such as Adrian’s father over lower-priority, often unnecessary cases. What we do not discuss as a society with as much fervour as the system and those who provide care is how we consume care, so we can create time and space to support those who really need necessary attention.
Dr Riaz Jetha
London

Complete Article ↪HERE↩!

Posted on

Palliative and hospice care in hospitals and clinics

— The good, the bad, and the ugly

By Earl Stewart, Jr., MD & Miguel Villagra, MD

I walk into the patient’s hospital room during evening rounds. He looks pale and tired, having recently completed a round of chemotherapy for his stage IV pancreatic cancer. His wife is at the bedside, scared and concerned about her husband’s rapid decline. I sit down to discuss goals of care when the patient immediately says, “I can’t do this anymore.” His wife responds immediately to the patient: “Of course you can.” As I delve deeper into the patient’s constant pain and discomfort, the conversation naturally shifts toward a comfort care-focused approach. After 55 minutes at the bedside, both patient and wife agree to further discuss this with the palliative care team. Ultimately, the medical team decided to transition the patient to hospice care.

Similar examples exist in outpatient practice. Take, for example, the 56-year-old female patient with metastatic non-small cell lung cancer who would clearly benefit from early institution of palliative care given the known mortality benefit. When you see her time and again, she engages in candid discussions with you as her physician that she would rather let “nature take its course.” She doesn’t want chemotherapy. She refused radiation. She continues to smoke. She doesn’t want her family to know, and palliative care options, though previously discussed with her, remain out of the question for her.

These are realistic examples from daily practice that present an interesting quagmire to the practicing physician as he or she treads the lines of patient autonomy and applies the evidence of what has been shown to clearly help a patient feel and live better, especially those with terminal illnesses. Tools exist to aid with these difficult conversations, and awareness among the patient, health care professionals, and family members makes all the difference in having these critical discussions. It’s often rather difficult to accept when you are taught to do something but come to the realization that sometimes doing nothing is what a patient prefers. In that moment, you realize that doing nothing means doing everything.

Sometimes practicing hospital medicine is a battle between life and death. Outpatient practice, too, is rife with such battles between the material and immaterial. Palliative and hospice care, though different, offer hope and comfort in some cases. Together, these medical disciplines not only alleviate physical suffering but also, through a conjoined care model, address the emotional and spiritual needs of patients and their families, guiding them through one of life’s most difficult journeys.

Palliative care is a specialized approach that aims to alleviate physical symptoms, manage pain effectively, and reduce the emotional and psychological distress experienced by individuals facing incurable illnesses, irrespective of their specific diagnosis. Palliative care is designed to improve the quality of life for both patients and their families. At the center of this is holistic care. A patient qualifies for hospice services if he or she has an illness that limits his or her life expectancy to six months or less.

Transitioning a patient from palliative care to hospice care is a crucial step that signifies a shift toward comfort-focused end-of-life treatment. Clear communication, compassionate support, and honoring patient and family preferences play critical roles in improving quality of life, increasing satisfaction with care, and enhancing emotional well-being during this transition. This process ultimately hinges on doing what is in the patient’s best interest and ensuring a death with dignity.

Physicians navigating palliative and hospice care face a unique set of emotional and professional challenges, such as handling end-of-life conversations with families to determine a patient’s goals of care, managing pain and symptom control effectively, and addressing spiritual distress in patients. However, within these challenges, there is a profound reward in making a significant difference in the final stages of a patient’s life. It has been previously heralded that caring for the dying patient is indeed a rewarding challenge given the intricacies it presents and doing so is crucially important is physician education. We now know that not only does education matter for physicians in these veins of practice, but it matters for nurses as well.

In palliative and hospice care, an interdisciplinary approach involves physicians overseeing medical decisions, nurses providing direct patient care and symptom management, social workers addressing psychosocial needs, chaplains offering spiritual support, and pharmacists ensuring proper medication management. Each team member contributes his or her expertise to create a comprehensive care plan that supports the physical, spiritual, and psychosocial well-being of the patient, highlighting the power of collaboration in providing holistic, patient-centered care.

Physicians navigating the complexities of palliative and hospice care must adopt practical strategies for effective patient management and compassionate support. Key strategies include fostering open communication with patients and their families, setting realistic expectations, and managing one’s own emotional well-being. Active listening, providing clear and empathic explanations, and involving the entire care team in medical decision-making are crucial for effective patient care.

Though we understand more as a physician community about employing palliative and hospice services for our patients when apropos to providing evidenced-based care, we are aware there is still work to be done to better the delivery of this care.

It has been documented that work is needed to further guide the integration of the family meeting specifically into oncology practice.

Recent data have shown how the institution of information technology and so-called “e-health” methods can be very helpful in individualizing care and extending palliative care services to patients.

We will all have these conversations. We will see patients like these. We charge all physicians to embrace the tenets of palliative care and hospice when appropriate for their patients and to learn more about the services offered in their hospitals, health systems, and practice structures to provide for the most optimal health outcomes.

Complete Article ↪HERE↩!