Patient and family engagement in hospice decisions – if they’ll let you

One of the highlights of 2011 for me was the introduction in May (see our post) of the Engagement Behavior Framework by SPM member (and JoPM founding co-editor) Jesse Gruman. She and her team methodically identified 43 behaviors to be done by an engaged patient or their proxy, in ten categories:

  1. Find Safe, Decent Care
  2. Communicate with Health Care Professionals
  3. Organize Health Care
  4. Pay for Health Care
  5. Make Good Treatment Decisions
  6. Participate in Treatment
  7. Promote Health
  8. Get Preventive Health Care
  9. Plan for the End of Life
  10. Seek Health Knowledge

On this blog, I humbly (or rudely) proposed an 11th category of patient engagement, one that underlies SPM’s policy work:

  1. Design and create a safe, decent, patient centered healthcare system.

This post touches on #9 and #11 – and perhaps on #1. Engaged patients and families need to be aware – before a crisis hits – of the hospice situation in their community.

Today’s New York Times has a touching and painful column by oncology nurse Theresa Brown, “Looking For a Place to Die.” It tells of a young mother with cancer who was at the end:

No one could say for sure how long she would live, but continued hospital care was clearly pointless. Nor could she go home: she needed more attention than her family could provide. Everyone — her physician, the husband, the palliative care team, we nurses — agreed she needed inpatient hospice care, and that it should be provided close to home. …

The problem was, she had no place to go. There was a hospice facility near her house, but it would accept her only if she would die within six days.

This is the reality in too much of America. (I don’t know about the rest of the world.) Hospice costs far less and is a far more pleasant experience, but policies often prevent doing it. In fact in the health reform debate, increasing hospice access was fraudulently misrepresented as the “death panels” issue.

So the cost and suffering continued – including the impact on family members. Look:

Aggressive growth of the disease in her brain had stripped her of her personality and her memories. … inpatient hospice care made sense medically, financially and psychologically for this patient, but the system simply wouldn’t allow it.

In addition to what you might call the patient’s right, there’s enormous painful impact on the family from being out of control (the hospital calling the shots) at what is in some cultures a natural part of life:  (emphasis added)

Roughly a third of family members of I.C.U. patients show symptoms of post-traumatic stress, according to research by the French intensive-care expert Elie Azoulay and his collaborators. If a loved one dies in intensive care after discussions about advance directives and patient wishes — that is, after the family has been made fully aware of the finality of the situation — the psychological fallout is even greater, approaching 80 percent.

When our policies require spending more, in a way that hurts people more, I say it’s time for change.

The time to influence your state’s hospice legislation is now, people. Before someone in your family needs it. Culture can change; rules can change. It happens when people insist. It takes time. Find out what your local options are, and if you need change, start now:

  9. Plan for the End of Life
11. Design and create a safe, decent, patient centered healthcare system.

Hospice experts, you’re welcome to add information in the comments.

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