End-of-Life Choice, Palliative Care and Counseling

Posts TaggedPain Management

The Takeaway: Hospices Diversify End-of-Life Care to Suit Boomers

By Elizabeth Nolan Brown
AARP
July 3, 2012

Hospice care with a side of golf? That’s just the beginning. Hospices are working to “diversify their services” in preparation for the eventual needs of aging boomersaccording to the Associated Press. In the meantime, providers would like to dispel myths that hospice care is all doom, gloom and candlelit bedrooms.

Hospice traditionally provides medical care, pain management and emotional and/or spiritual support to patients with terminal illnesses. According to the National Hospice and Palliative Care Organization, as many as 40 percent of all deaths in the United States were under the care of hospice in 2010. The number of Americans who received hospice care that year had more than doubled since 2000.

For most patients, hospice care means periodic home visits from hospice workers; a much smaller group receives round-the-clock home care or care at a hospice house. There is a growing trend, however, in this “pre-hospice” concept — longer term programs for patients living with complex illnesses who are not necessarily terminally ill. For these patients, Southern Tier organizes things like weekend trips to casinos, golf outings, Florida vacations and dinners out. “If the real focus is to help someone stay comfortable, then that’s hospice,” said Stawasz.

Ira Byock, director of palliative medicine at the Dartmouth-Hitchcock Medical Center in New Hampshire, told AP that he hopes boomers will “take back” end-of-life care, as they did with the natural childbirth movement and allowing fathers in delivery rooms.

“It was driven by the boomers as citizens and consumers; it was an advocacy movement. A very similar thing needs to happen now” with hospice and end-of-life care, he said.

Tuesday Quick Hits:

  • More employers offer “wellness” incentives. A new survey from the Society for Human Resource Management found 20 percent of employers offer discounted health insurance premiums for non-smoking employees, up from 12 percent in 2011. Incentives to join gyms, lose weight or institute other healthy habits are also increasingly common.
  • C.O.P.s take back Boston senior home. The 11-story  housing complex for older adults was overrun with drug-dealing, crime and loiterers, until a citizen patrol unit (called Citizens on Patrol, or “C.O.P.”) helped make the hallways safe for senior residents again.

Oncology + Palliative Care = Winning Team

By Hollye Harrington Jacobs
Huffington Post
June 26, 2012

Right after my FBC diagnosis (f-bomb breast cancer for new readers), my husband and I had an information gathering week. After a series of diagnostic tests to determine the extent of the disease, we had a series of meetings to interview doctors to determine who would become a part of my/our health care team.

One big misnomer in our culture is that doctors (solely) develop a patient’s plan of care. No. No. No. This could not be farther from the truth! Patients have a real responsibility to be fully engaged in the development (and revision) of a plan of care.

After the testing was complete, we had meetings and interviews with the following doctors:

  • Two surgical oncologists (surgeons who specialize in breast cancer)
  • Three oncologists (doctors who specialize in treating cancer)
  • Two radiation oncologists (doctors who specialize in radiation of cancer)
  • Two plastic surgeons (doctors who specialize in reconstruction after a mastectomy)
  • One palliative care physician (doctor who specializes in pain management)

Whoa. Whoa. Whoa. Are you wondering, “Why palliative care?” Most people hear the phrase “palliative care” and think “buy the plot… she must be dying.”

We met with a palliative care physician NOT because I was dying, but because palliative care focuses on providing pain and symptom relief. If you take only ONE thing from this blog post (though I hope that you take more!), please learn that palliative literally means the relief of pain. This is such a pervasively-misunderstood concept in our culture, even in health care. Don’t even get me started.

Well, I already got myself started, so let me tell you that as a nurse and now a patient, I am all too familiar with the fact that surgeons and oncologists are not experts in pain management, despite inflicting a great amount of pain on their patients, which is quite an oxymoron, if you ask me. But it’s the truth. The silver lining is that there is an area of specialty focused on relieving pain and symptoms and it’s called… palliative care!

Incorporating palliative care into a patient’s care from the time of a diagnosis is deeply important to me because I have witnessed the benefits of palliative care as a nurse and experienced the benefits of palliative care as a patient. Consequently, I want every person who has to go through the wretched treatment for this disease to have access to the benefits of palliative care.

Such benefits include:

  1. Pain management
  2. Symptom management (e.g., fatigue, anxiety, shortness of breath, nausea, depression and constipation)
  3. Coordination of care
  4. Improved quality of life

Because the side effects of the disease and its treatment can linger… and linger… and linger, cancer has the potential to become a chronic issue. Speaking of which, I still can’t remember much of anything, courtesy of chemo brain. I also still can’t feel my toes, courtesy of the chemotherapy-induced neuropathy.

The great news is that the fields of oncology and palliative care are beginning to work together more consistently from the time of a patient’s diagnosis. This has traditionally not been the case because of the assumption that palliative care is only helpful at the end of life.

In fact, consistent with recommendations of the American Society of Clinical Oncology, the National Cancer Policy Board, and the National Comprehensive Cancer Network, concurrent palliative care is slowly but surely becoming acknowledged as a best practice for patients.

Finally, it is no longer the case that palliative care is consulted only at the time of a patient’s death, which is magnificent silver lining, if you ask me!

60 Minutes Highlights Problem of Americans “Dying Badly”

CBS News broadcasted a story on Sunday, Nov. 22, at 7 p.m. ET/PT on dying in America.  Compassion & Choices,  applauds the effort to highlight how many Americans meet death in contradiction to their values, beliefs and stated desires, but disagrees with the focus on cost.

“Families cannot imagine there could be anything worse than their loved one dying. But in fact, there are things worse,” says Dr. Ira Byock in the broadcast. “Most generally, it’s having someone you love die badly – dying, suffering, dying connected to machines.” Byock heads the palliative care program at Dartmouth Hitchcock Medical Center in Lebanon, N.H. “Much end-of-life care merely prolongs a miserable dying process,” said

Barbara Coombs Lee, president of Compassion and Choices. “As individuals face the end of life, and try to navigate the health care system, their own values and choices should be paramount. We know the greatest tragedy is the human cost, not the monetary cost.”

The story of Margaret Furlong demonstrates how badly end-of-life care can stray from patient wishes. Margaret entered the hospital with an advance directive, stating she was not to receive CPR or extraordinary efforts to keep her alive. Suffering from ulcers on her shoulder and hip, she was in constant pain. The hospital had Furlong’s advance directive, but mistakenly believed she wanted every effort to keep her alive.