Tag Archives: palliative care

Palliative care. Like hospice, the interdisciplinary approach of palliative care focuses on providing comfort for seriously ill patients, regardless of age. Unlike hospice, comfort care is not limited to those with a terminal diagnosis and can be offered at the same time as a patient is pursuing curative treatment.

Advance Care Planning, culture change, death and dying, elder care, hospice care

Saluting an Unlikely Hero

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Sometimes you find a hero in the unlikeliest of places. This week I came upon an obituary for Dave Schwartz, 63, a long-time Weather Channel meteorologist. He had twice overcome pancreatic cancer 10 years ago, but began his struggle anew with a stomach cancer diagnosis in 2015.

Mr. Schwartz had joined the Weather Channel in 1985, initially as a newsroom assistant at the same time that he was working for the Fulton County Health Department in Georgia. He became an on-camera meteorologist in 1991.

Cancer, like so many serious illnesses, is often enshrouded in silence and secrecy. It would have been understandable had Schwartz decided to simply take the time off that he needed to undergo treatment and then return to work without talking about his absence. Instead, he chose Feb. 4, of this year, World Cancer Day, to address his viewers.

This is some of what he said: “I want to let you know the reason why I have lost 35 pounds in the last five months is that I am being treated for cancer,” he said on camera. “Stomach cancer, of all things, for a foodie.”

The following month, he went public again, via an interview with Bailey Rogers, a communications specialist at the Weather Channel, for the website Medium. Rogers asked about the side effects of cancer and its treatment, most likely expecting to hear about fatigue, pain, discomfort, etc. Instead, Schwartz responded that “In a sense, having cancer and the impact it has on my life has really enriched my life tremendously through strengthening my relationships with people.”

He also talked about how he and his wife had become philosophical about his condition. He went on to say that “None of us is guaranteed tomorrow — we all know that. As far as I’m concerned, whether you have cancer or not we are all in the same boat. None of us really know that we have more time than what we have right now. So I’m no different than anyone else. I have my struggle, I have my cross to bear — other people have their crosses to bear — and let’s hope that we wake up alive tomorrow.”

I found Schwartz’s comments – not to mention the bravery in sharing his struggle publicly – deeply moving. And it made me think about how powerful storytelling is.

We can learn so much from others not only about the nature of some of the more pernicious illnesses that afflict people, but also about how we can confront illness – mortality itself – with something approximating appreciation for the gift of life in the moment and maybe even a hint of grace.

And it also made me think: Wouldn’t it be helpful if more public figures could follow Dave Schwartz’s lead and talk about the struggles they might be experiencing and, along the way, educate us about what treatment and living with illness is all about?

And while we’re at it, wouldn’t it be helpful if these folks could make some news by talking about and signing advance care directives? Maybe talk about how they thought about the prospect of measures like CPR, feeding tubes and intubation and decided, “Nope. Not for me.” And then maybe figure out a way to have it go viral, much as the “ice bucket challenge” did for ALS. That would be pretty heroic, too.

Advance Care Planning, baby boomers, death and dying, elder care, hospice care

What’s Your Big Idea About End-of-Life Care?

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The Aspen Institute Health Strategy Group wants to hear from us, by June 1explosion-1246507_640. Specifically, in advance of its Spotlight Health session in June, it wants to know: what is our big idea about end-of-life care?

Of course I couldn’t resist submitting my own two cents’ worth. Here it is:

From my vantage point as a hospice volunteer, seasoned journalist and author of a just-published book about end-of-life issues, my big idea is that at age 40+, hospice in the U.S. is in the midst of a mid-life crisis and needs a radical transformation. Not in its philosophy or system of care, but in how it is paid for. It’s time to start from scratch and design end-of-life benefits based on people’s needs, not on their prognosis.

Although hospice benefits are continuously being tweaked, their broad outlines have not fundamentally changed since its inception. But the very nature of the end-of-life experience now is far different than it had been in the 1970s, when hospice cared mostly for people with cancer. Hospice was not envisioned to address the needs of the frail elderly living with multiple chronic conditions, or the ravages of dementia, whose disease trajectories are certainly far less predictable – and often more complex — than cancer.

Two of the essential elements of the Medicare hospice benefit have come to haunt us. First, it is based on prognosis, that is, it is available for a limited time – six months if the illness runs its normal course. Second, it requires that a person give up any treatment or care that might be deemed “curative.” The choice is stark: cure or care. Either/or, but not both. Hardly surprising, then, that so many people do not even choose hospice care until it is very late in the course of their illness. Too late, in my view, to benefit fully from what this holistic, interdisciplinary and profoundly compassionate care can offer.

I believe we have come to a “tear down this wall” moment in end-of-life care. Tear down the wall that separates palliative care and hospice care; end the tyranny of the six-month cutoff for eligibility. Tear down the wall that separates people who still want to continue treating their illness from those who can accept a natural death. It’s time to develop a health care policy and payment system that embraces concurrent care without costing taxpayers more than the current system that is fragmented, costly, often dysfunctional and unsustainable.

End-of-life care involves so many intertwined issues that must be addressed. Just a few: better education and training for physicians and nurses; better training and better pay for the home health and personal care aides who are on the front lines of caring for the very ill; coordinated care aimed at helping people live as well as possible and in their homes as long as possible, without hospital readmissions; focusing more on culture change and person-centered care in long-term care settings; and more effective ways of providing dementia care.

But public policy changes would have a huge impact on all these issues. How do we get to a better future? In a June 2015 Health Affairs article about what is ahead for Medicare’s next 50 years, former Senate Majority Leader Tom Daschle defined his prescription for success as: good public policy, superior technology and enlightened leadership. It seems to me that this prescription misses one element, which is public engagement. Transforming hospice care will likely not happen without vocal and insistent advocacy from all of us. So it’s time for my fellow aging baby boomers to tap back into our activist genes and start insisting on the kind of care we are all going to need in the not-so-distant future.

The Aspen Institute Health Strategy Group is part of the Health, Medicine and Society Program at the Aspen Institute. Co-chaired by former US Health and Human Services Secretaries and Governors, Kathleen Sebelius and Tommy Thompson, its 24 members are senior leaders across influential sectors: health, business, media, technology and more.

Advance Care Planning, death and dying, elder care, hospice care, hospice volunteering

An Artful Way to Teach About Hospice

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Not everyone understands what hospice care is, or what hospice care teams – physicians, nurses, home health aides, social workers, chaplains and volunteers – actually do. Not only for people who are very ill, but for their caregivers, too.

So, educating the public about it continues to be critically important. One unique and moving way to do that was organized by the Louisiana-Mississippi Hospice and Palliative Care Organization:ArtofHospice a traveling exhibit of artworks created specifically to convey “the compassion and dignity that hospice provides,” LMHPCO executive director Jamey Boudreaux told me.

It took a lot of thought and a fair amount of time to organize the project. A competition was launched in 2013 at the organization’s annual conference, where member hospices were encouraged to find an artist they could work with. But before the artists could apply paint brush to canvas, to get a better sense of the work, they were to go through hospice volunteer training and then spend time shadowing hospice team members. After that, they created a variety of works in different media, including paintings, sculpture, stained glass and photography. In 2014, a group of art critics and artists judged the work of 40 artists, representing 40 member hospice agencies, and selected the 16 finalists that would make up the traveling exhibit.

"A Window Into Hospice," by Tammy Hromadka. Six panels set in an old window frame, each showing the hands of a caregiver.
“A Window Into Hospice,” by Tammy Hromadka. Six panels set in an old window frame, each showing the hands of a caregiver.

Shown here is artist and musician Tammy Hromadka’s “A Window Into Hospice.” Ms.Hromadka volunteers at CHRISTUS Cabrini Hospice’s Grace Home in Alexandria, Louisiana.

As Jamey Boudreaux pointed out, though, “The Art of Hospice” wasn’t just an art exhibit. Over an 18-month period, each of the 10 venues in Mississippi and Louisiana also presented educational courses for physicians, nurses, CNAs, chaplains and volunteers. The public at large also attended sessions devoted to advance care planning. The exhibit stayed in each venue for three or four weeks.

“It raised the level of awareness about hospice in these communities,” Boudreaux said.

Still, LMHPCO found that there was much misinformation or misunderstanding to address about what hospice is all about. Some people were unaware, for example, that hospice is not just “the government coming in to take over for family members,” Boudreaux explained; or that it does not provide 24-hour care; or that there are private agencies – nonprofit and for-profit – that provide this care.

The traveling exhibit involved many logistical challenges and was a one-time event. Boudreaux has talked about the art project with fellow hospice organization executives, but so far none have sought to replicate what LMHPCO did. Most of the artworks have been returned to the artists and the remaining few soon will be returned.

So what does the education committee of LMHPCO do for an encore? The focus will be on providing care for the homeless and for those who are the so-called “un-befriended” — people who do not have caregivers, at the organization’s upcoming conference. I’m eager to see its creative approach to professional and public education after that.

Advance Care Planning, elder care, long-term care

Dazed & Confused at the Warehouse

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The Costco in our area recently shuttered its long-standing warehouse store and opened a brand-new, bright and shiny and much larger one a few miles away. Eager to see what the new store had to offer (and lured by the prospect of a free roasted chicken), my husband and I made our first visit.

Once inside, it was simply…overwhelming. First, the sheer enormity of the place. It’s hard to visualize what 148,000 square feet of space actually looks like, until you’ve actually sprinted from one end of the store to another (in this case, to pick up an item I’d forgotten, while my husband waited in line with our cart.) There were yet more endless aisles than there had been in the old store, with unreachable goods stacked up to the ceiling. I barely knew where to find anything in the old store, but the new one was even more of a mystery. There was no way to figure out the logic (or lack of it) behind what products were located where. There was no one to guide us; what staff members we saw were absorbed in their own tasks.

So, in short, I felt lost, confused, intimidated, turned off and discouraged.

And it made me think: maybe this is a medical metaphor. Maybe this must be how too many patients and caregivers feel when they’re suddenly thrust into the health care system to deal with serious illness or a medical crisis. The hospital setting alone can be jarring and intimidating. In a crisis, patients (or their caregivers, if patients aren’t in a position to speak for themselves), must make decisions about treatment and care fairly quickly.

Much has been written about how shared health care decision-making (by patient and physician) has come to replace the old paternalistic model in which physicians mostly made decisions for you. But the fact is, particularly in a crisis, there is not an even playing field between you and your medical team. The team has the advantage of having far more knowledge and experience with your condition than you, and unless the team includes gifted communicators, that puts you at a disadvantage.

So what can you do to avoid becoming dazed, confused and fearful about making harmful choices in a medical setting? A little preparation, while you’re in good health, can help. Here are just two of many useful sources:

Recognizing that patients need better information about what care they truly need, Consumer Reports and the American Board of Internal Medicine (ABIM) Foundation have developed the Choosing Wisely® website (http://www.choosingwisely.org/patient-resources/) which aims help consumers choose care that is supported by evidence; doesn’t duplicate tests or procedures already received; and is truly necessary. More useful information is available at http://www.consumerhealthchoices.org, including advice for caregivers and treatments and tests for elders.

One of the best things you can do is to have an advance directive that spells out the kind of care you’d want if you couldn’t speak for yourself. Caring Connections is a program of the National Hospice and Palliative Care Organization (NHPCO). You can find advance directive forms for each state on its web site: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289. Caring Connections makes its forms available free of charge.

I haven’t yet found a road map for our local Costco. Fortunately, though, there are many to be found, pre-crisis, in health care.

Book Reviews and News, death and dying, elder care, hospice care, palliative care

An RN’s View From the Front Lines of Care

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When her children were young, Theresa Brown, RN, made a mid-career change: from English professor at Tufts University to nursing, and chose to specialize in medical oncology. We should all be glad she did, because she has chronicled her experiences – and by extension, illuminated some of the most pressing issues and challenges in our health care system – in two excellent books as well as in personal essays in The New York Times. And she does it with clarity, insight, humor and understated eloquence.TheShiftcover

Her voice is important because nursing truly is the heart of care for the ill. No other health professionals spend as much time providing hands-on care for the sick than nurses. Our health care system is increasingly complex, technology-laden and hyper-specialized. So the need for a humanistic perspective from those who are on the front lines has never been more pressing.

I had the great pleasure of interviewing Theresa recently, following her book tour for The Shift: One Nurse, Twelve Hours, Four Patients’ Lives. The book focuses on a day in her life in the oncology ward of a Pittsburgh teaching hospital; she subsequently left that position and currently works as a hospice nurse, visiting people in their homes.

Just a couple of highlights of our conversation:

Theresa told me that she is comfortable in her current role as a home hospice nurse. In fact, she said, one reason she made this switch was that she always likes to learn new things and wanted particularly to learn about how the kind of care provided for patients at home might ultimately be transferred to the hospital setting. Care that offers more dignity and privacy for patients, such as letting patients sleep when they need to; or even wear their own clothes; and making it easier for family, friends and caregivers to visit any time and stay overnight if need be.

“It would be great to go back to a hospital and say, how can we make things better?” she said. “Creating a balance of comfort and quality care.” Even making the decision not to wake people in the middle of the night would be an enormous change, she pointed out.

We also talked about the ideal of the team approach in palliative and hospice care, where physicians and nurses work closely together in an atmosphere of mutual respect. (I’ve interviewed a number of such teams and, like proverbial married couples, they often do finish each other’s sentences.) In a hospital setting, Theresa noted, “communication between physicians and RNs often is not what it should be.”

She’d like to see more inter-professional training focusing on better communications so that “we could view each other as people and understand each other’s roles and responsibilities, and the pressures on each of us.”

There is no doubt in my mind that Theresa will keep learning – and educating us along the way – and that she’ll continue to make a difference in reaching the goal of improving patient care. In the meantime, you can order books, read her columns or join her mailing list at http://www.theresabrownrn.com.

 

 

 

 

 

 

 

 

Advance Care Planning, elder care, hospice care, palliative care

Overlooked for 2015 Top Medical News

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LastcomfortspaperWhat was the top medical news story in 2015? In November, Medscape (a medical website from WebMD) asked just that of its readers — primary care physicians, specialists and other health professionals – and more than 400 replied. Number one was: a major change in diagnostic codes, known as ICD-10. Not surprising, perhaps, as there are many more new codes for physicians to ponder, and probably much more administrative time required, as a result, to the chagrin of small practice owners. (http://www.medscape.com/viewarticle/855309)

If we’re talking about developments that have the potential to make a big difference for patients in the coming years, though, I’d like to suggest at least two that ought to top the list.

My first “top news” story affects advance care planning. At long last, as of January 2016, you and your doctor will be able to discuss your goals, beliefs, values and fears should you become seriously ill – and Medicare will actually reimburse him or her for doing it. Granted, the reimbursement isn’t huge — $86 for a mere 30-minute discussion and $75 for a follow-up – but maybe it will be enough of an incentive to encourage more physicians to engage in these critical conversations.

These are difficult discussions to engage in, whether you’re talking with family and friends or your physicians. And too many physicians’ communication skills leave something to be desired. But the goal is to make sure that if you become very ill – particularly if you are not able to speak for yourself – your care will reflect your wishes and values.

My second “top news” story was the selection of hospices that will participate in the Medicare Care Choices pilot project, with implementation beginning in January 2016.

The Care Choices pilot will allow certain hospice patients with advanced cancers, chronic obstructive pulmonary disease (COPD), congestive heart failure, or HIV/AIDS to elect hospice care without having to give up curative treatments.

             Originally, the Centers for Medicare and Medicaid Services (CMS) was going to pick at least 30 rural and urban Medicare-certified and enrolled hospices to participate. It expected to enroll 30,000 beneficiaries over a three-year period. But because there was so much interest in the pilot, CMS expanded it to more than 140 Medicare-certified hospices and extended the duration of the project from three to five years. It expects to enroll as many as 150,000 eligible Medicare beneficiaries.

Why is this important? Because the idea of forgoing treatment aimed at cure – currently a requirement to enter into hospice care – has discouraged too many patients and their physicians from considering comfort care solely. Ideally, when the pilot is done, there will be useful evidence about whether concurrent care (curative and comfort) improves quality of life and results in fewer hospital readmissions and, possibly, lower Medicare costs.

In my “wishful thinking” category: Maybe in 2016 CMS will announce it is eliminating the six-month prognosis requirement for patients to enroll in hospice care. That would certainly get my vote for top medical news story next year!

 

 

 

 

elder care, palliative care

What Palliative Care Should Look Like

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PixabayholdinghandsSurprisingly, many people do not know what palliative care is despite its great strides in recent years. A Consumer Reports survey of more than 2,000 adults, for example, showed that 61 percent had never heard of palliative care.

As the population ages and the demand for palliative care grows, the ability to assess quality throughout the country and across care settings is increasingly important, as Dr. Joseph Rotella, chief medical officer of the American Academy of Hospice and Palliative Medicine (AAHPM) and co-chair of its Measuring What Matters Clinical User Panel explained. And because there has been “no consistency regarding which measures are required by various groups, from accrediting organizations to payers,” AAHPM and the Hospice and Palliative Nurses Association (HPNA) came up with “measuring what matters” quality indicators.

Moreover, he said, “there has not been enough focus on cultural sensitivity and social supports. The quality indicators represent a small set of measures to use right now in hospice and palliative care because they are meaningful to patients and have a real impact on them.”

These measures are not mandatory. But if you are seriously ill, or taking care of someone who is, this is the kind of care you should look for. The measures call for:

  1. A comprehensive assessment (physical, psychological, social, spiritual and functional) soon after admission.
  2. Screening for pain, shortness of breath, nausea and constipation during the admission visit.
  3. If you screen positive for at least moderate pain, you should receive treatment (medication or other) within 24 hours.
  4. Patients with advanced or life-threatening illness should be screened for shortness of breath and, if positive, to at least a moderate degree, have a plan to manage it.
  5. Engaging in a documented discussion regarding emotional needs.
  6. Hospice patients should have a documented discussion of spiritual concerns or preference not to discuss them.
  7. Documentation of the surrogate decision-maker’s name (such as the person who has health care power of attorney) and contact information, or absence of a surrogate.
  8. Documentation of your preferences for life-sustaining treatments.
  9. Vulnerable elders with documented preferences to withhold or withdraw life-sustaining treatments should have their preferences followed.
  10. You or your family or your caregivers should be asked about your experience of care using a relevant survey.

 

 

death and dying, dementia care, elder care, hospice care, hospice volunteering, palliative care

Living Well to the End

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Last Comforts

old-people-616718_1280Did you know that November is National Hospice and Palliative Care Month? It is, thanks to the efforts of the National Hospice and Palliative Care Organization. It’s a month devoted to broadening public awareness about the outstanding and much-needed care that hospice organizations provide for the very ill and their caregivers.

So I thought I’d do my part. I’m excited to announce the upcoming publication of my book, “Last Comforts: Notes From the Forefront of Late-Life Care.” Why did I write this book and start this blog?

I was drawn to hospice care because its caring and profoundly respectful philosophy and practice offers physical and emotional comfort, support and kindness to the dying and their families. My family experienced that first-hand with my mother’s last illness, a stark contrast five years after my father’s more conventional medicalized, nightmarish last months. So when I had an opportunity to sign on for hospice volunteer training at Holy Name Medical Center, I took it.

“Last Comforts” was born when one nagging question kept arising early in my journey as a hospice volunteer. Why were people coming into hospice care so late in the course of their illness? That question led to many others that rippled out beyond hospice care. Are there better alternatives to conventional skilled nursing home operations? How are physicians and nurses educated about advanced illness and end-of-life care? What are more effective ways of providing dementia care? What are the unique challenges of minority and LGBT people? What is the role of popular media in our death-denying culture? What has been the impact of public policy decisions about palliative and hospice care?

The book is part memoir of lessons learned throughout my experiences with patients and families as a hospice volunteer; part reporting about the remarkable pathfinders and programs in palliative and late-life care; and part call to action. I  encourage readers – particularly her fellow baby boomers — not only to make their wishes and goals clear to friends and family, but also to become advocates for better care in the broader community.

It’s no secret that care at the end of people’s lives right now is mostly fragmented, uncoordinated, often futile and unsustainable. But without question, it can be managed far better for those who are ill as well as for their caregivers. I’m hoping that “Last Comforts” – and this blog — will help shed light on how we can help make that happen.