End-of-Life Choice, Palliative Care and Counseling

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Palliative Care Deserves Physicians’ Attention

By Joe Cantlupe
HealthLeaders Media
July 19, 2012

Do you know about palliative care, the comprehensive treatment for the very sick, but not for those who are dying?

Some doctors do not.

As a physician, do you feel it is a sign of “failure” on your part, when longtime patients have grown tired of treatments, and simply want comfort as they approach end of life?

Some physicians think it is.

As the population ages, and hospitals prepare to care for more chronically ill patients, more physicians should get acquainted with palliative care, to not only to improve patient care, but as a potent cost-savings tool.

With palliative care, hospitals can avoid needless tests and procedures, in part, because patients no longer want them. Palliative care is the comprehensive treatment focused on pain, symptoms and stress of serious illness, or even spiritual assistance for the very sick. Some studies have shown it can extend life.

Still, although not widely practiced, palliative care is becoming part of the discussion among healthcare leaders to improve care, especially for the elderly.  In May, a panel of healthcare leaders met in Chicago as part of a HealthLeaders Media Breakthroughs session that focused on improving readmission rates for hospitalized cardiac patients. The talks veered off into other topics, among them palliative care, as well as hospice, or end of life care.

“Obviously, it’s probably one of the most complex topics we could discuss,” said Greg Johnson, DO, chief medical officer for Parkview Health, Ft. Wayne, IN, during the panel discussion.  ”I also think that when we talk about end-of-life care, we need to approach it with more curiosity and information than with judgment and direction,” Johnson says.

Although there were almost no palliative care programs in America a decade ago, about 63% of hospitals with 50 or more beds have a palliative care team, according to the Center to Advance Palliative Care. It is likely that palliative care is going to expand, but it is still largely misunderstood, even among physicians.

For those patients who are weary of dealing with their pain, tired of medical procedures, and who want to live their days as fully as possible, palliative care may be the answer. In cases of people even more seriously ill, and possibly closer to death, hospice may be the correct treatment option. Too often, physicians don’t pose the question: Patient, what do you want to do?

Bruce Robinson, MD, MPH, director of the chief of geriatric medicine at Sarasota Memorial Hospital in Florida told me how, too often, physicians may articulate their hopes for patients, even when it’s a terrible illusion.

“The patients want to keep that hope,” he says. “The doctors want to just do what they do and that’s how they make their living, so they are happy when a patient says, ‘I want you to do something. I want to pretend I’m not dying.’ So stuff gets done.”

Other physicians may not endorse palliative care, or even hospice care, because they wrongly feel those programs may reflect poorly on their own work, healthcare leaders tell me. Some doctors may see those programs as symbolic that they have given up hope, that all those procedures, all the plans for their patients, were for naught. That’s too bad.

At the Breakthroughs session, panel member Johnson raised the point that physicians “feel like it’s a failure” to have such discussions involving palliative or end of life care. That shouldn’t be the case, he says. “We have to be willing to follow-up what the patients’ goals are,” Johnson says.

“Because what I’ve seen too frequently is the patient will have stated their goals of care and then somewhere that gets overwritten. And we see the 94-year-old patient that didn’t’ want anything who is on on a ventilator for a month. And that’s a very sad thing.”

The essential question for palliative care is “how do we manage symptoms so the patient can feel as good as possible, and have optimal life experience? The conversation in chronic care management goes a long way,” said panel member Kathleen Martin, RN, vice president of patient safety and care improvement for Griffin Hospital, Derby, CT.

While palliative care is increasing, its generally poor name recognition, among the public, as well as among healthcare workers, including physicians, is a significant obstacle, Timothy E. Quill, MD, a professor of Medicine, Psychiatry and Mental Humanities at the University of Rochester School of Medicine and Dentistry tells HealthLeaders Media.

“Palliative care has a name recognition issue,” Quill says. “About 20% of the public may know what it is, but once people and patients learn what it is, their question becomes: ‘why didn’t I get that earlier, why isn’t that the care for all seriously ill people?’ Hospice care has a higher name recognition, but it’s for people at the end of life,” he says.

While there is some uncertainty what exactly is palliative care, some healthcare facilities are offering both palliative and hospice care programs, which they see as crucial to improve care among the elderly, and offering as many options to them as well as their families.

The Hospice of the Valley, in San Jose, CA, is one of those facilities that serves both populations.  There is an increasing need for mental health or community-based programs to assist the patients, says Sally Adelus, president/CEO of the Hospice of the Valley, told HealthLeaders Media.

Because the scope of care is evolving for the elderly populations, it’s important that physicians work closely with families to consider palliative or hospice care options. The Sutter Health system, a network of doctors and hospitals in northern California, has an advanced illness management program that partners with patients and families to better coordinate care for palliative patients and also consider end of life options, says Brad Stuart, MD, chief medical officer at the Sutter Care at Home in Fairfield, Calif.

Stuart says it’s important that both disciplines (palliative and hospice) “collaborate for the best outcomes we can have.” Much of the focus for improved patient care, especially those in palliative care, is moving toward ” focusing on goals of patients in their own lives.”

Even in the hospice and palliative care world, however, there are “turf” struggles, as in many other areas of healthcare, he says. “We’re trying to change the medical culture. It’s an uphill battle,” Stuart says.  Physicians gaining knowledge about such care is a start, he adds.

Healthcare Equality a Must in American Hospitals

The Miami Herald

Posted on Wed, Jun. 16, 2010

BY JANICE LANGBEHN
www.hrc.org

What happened to me and my family is unimaginable for most people. In 2007, the person with whom I shared my life for 18 years was rushed to the emergency room with a brain aneurysm. Far from home on vacation with our children here in Florida, my partner was taken to Jackson Memorial Hospital, and I followed closely behind.

When I arrived shortly afterwards, I was told I couldn’t go to her side and instead paced around the lobby wondering about her condition. By the time they finally let me in hours later, it was with a priest as he performed last rites.

Dealing with any medical emergency is a nightmare, but because my partner Lisa and I were both women, some of our last moments together were robbed from us. I was told by an employee at Jackson that we happened to be in an “anti-gay city and state.”

The American healthcare system failed us. Even though I had power of attorney, JMH had no policies in place to explicitly protect lesbian, gay, bisexual and transgender (LGBT) patients and their families, and so I was treated as a stranger. The hospital still refuses to apologize.

My life changed that day, and not only because Lisa was gone. I realized I had a story to tell, not just about LGBT rights — but about the human right to decide who should be with you in sickness and in death.

Earlier this year I received a call from President Obama telling me that he wanted no other family to have to go through what we did. In a memo directing the secretary of the Department of Health and Human Services to protect the visitation and medical decision-making rights of LGBT people, he wrote, “There are few moments in our lives that call for greater compassion and companionship than when a loved one is admitted to the hospital.”

Luckily, the president was not alone in seeing the need for change. The Joint Commission, the agency that accredits and certifies healthcare facilities nationwide, recently announced new standards that require fully inclusive nondiscrimination policies. Taken together, these developments mean that LGBT patients and their families will have dramatic new protections for healthcare equality — in hospitals nationwide, from Florida to Alaska and everywhere in between.

And it’s a good thing, because my story is all too common. A new analysis of healthcare equality by the Human Rights Campaign (HRC) Foundation found that more than nine out of 10 U.S. healthcare facilities don’t have fully inclusive policies toward LGBT people. Out of the thousands of hospitals nationwide, just 11 individual facilities and one network of 36 hospitals reported providing comprehensive healthcare equality. And tragically, less than a third grant equal-visitation access for same-sex couples and same-sex parents through explicitly inclusive policies.

In Miami, the report found four healthcare facilities that don’t include “sexual orientation” or “gender identity” anywhere in their Patients’ Bill of Rights or nondiscrimination policy: Baptist Hospital, Cedars Medical Center, Mount Sinai Medical Center and Brooks Rehabilitation Hospital.

Major healthcare providers are starting to understand change is coming, with meaningful results. Last week, Kaiser Permanente updated their Patients’ Bill of Rights and visitation policies to fully protect LGBT patients and their families from discrimination. One of the nation’s largest not-for-profit health providers, Kaiser Permanente’s network of 36 hospitals and 430 medical offices has a fully inclusive nondiscrimination policy for LGBT patients effective June 1.

The work of the HRC Foundation and Kaiser Permanente should put healthcare facilities on notice: Move toward greater inclusiveness, sooner rather than later, because that’s where America is headed.

Janice Langbehn is the surviving partner of Lisa Pond and advocate for LGBT healthcare equality. She lives in Lacey, Wash.

READ THE FULL STORY AT THE MIAMI HERALD >>