Hospice stays remain far too short

Les called me about his PSA.

“Jim, it’s rising and now up to eleven and they’re recommending treatment.  What would you do?”

Even as a long retired MD, I still get medical calls from friends and relatives.  Actually, I feel honored and try to do my best, researching the latest journal articles and editorial opinions.  Of course, the prostate cancer literature is cloudy at best with scant evidence that the huge number of surgeries are actually saving lives.  Most of us die with prostate cancer but not of prostate cancer.

Les went ahead with surgery which proved to be both difficult and non-curative.  The cancer was found to have spread into the pelvic lymph nodes, plus he went into a very rapid irregular heart rhythm requiring a stay in the ICU for a few days.  After that he was given radiation and hormone blocking drugs to try to stop the cancer.

Les seemed to stabilize and did reasonably well over the next four years, but then developed pain and fever in the left flank.  The CT scan showed that the kidney was obstructed by a tumor mass.  Looking in there with a scope, a small stent was passed up into the kidney to drain the pus, and a new cancer found in the area – most likely secondary to the radiation he received.

As Les become weaker the family rallied around.  Jeannie, his wife, and the three adult children and seven grandchildren were supportive.  Jeannie went with Les to the oncologist who prescribed chemotherapy to “buy time,” but again there were complications.  Les became weaker, lost all sense of taste and smell, and it was found he had a very low serum sodium level.  This required hospitalization, water restriction, and very expensive drugs.

About this time, Les said “no more.”  The treatments had devastating effects that weren’t benefiting him.  Jeannie was providing all his care at home, a hospital bed and recliner were purchased, and part time help employed.  The doctors were “giving” Les about a year to live, but when I stopped by to see him, his skin was pale and clammy, his pulse 120, and he could barely stand up.  I asked Jeannie what she would do when the end came.  She said, “Well, I’m not going to call 911 because they would come in and do CPR and Les certainly doesn’t want that.”

As gently as I could, I recommended that Jeannie talk to her doctors about hospice and introduced her to the POLST form.  Her first reaction was that Les wasn’t sick enough yet for the 6 month prognosis.

I responded, “Jeannie, why not just ask for a hospice evaluation and let them get to know him and evaluate his current status.  They are really great at this.”  I gave her a hospice brochure and a POLST form and suggested that she and Les discuss this with their doctors.

Fortunately Les was shortly thereafter on hospice with a signed “DNR” on his POLST form which would be honored by the medic  if called.  Extra help was provided and Jeannie began to get a little more sleep.  Les died a few weeks later with Jeannie and family at the bedside and the hospice nurse present.

Comment:  The stays in hospice remain far too short despite their amazing benefit to patients and families.  One surgeon said, “Dying without hospice would be like having surgery without anesthesia.”

One cause of delay in hospice referral is the Medicare requirement that all curative attempts be stopped on entry into hospice.  Medicare has been delayed in initiating a trial to allow continuation of curative attempts while in hospice.  It remains understandably hard to make the mental and emotional switch from the curative mode to the comfort measures only mode.  So we all need to work on this — the physicians, support groups, chaplains, families, and those involved with palliative care.  Many are unaware that their insurance plan may offer hospice benefits under the age of 65, and also pre-hospice benefits may be available for those wishing to continue curative efforts.

One of the newest specialties in medicine is palliative care — those who take a holistic view of the patient, focus on symptoms and comfort measures while taking into account all the variables like spiritual beliefs, other specialties involved, family dynamics, etc,  Long considered to have opposing views, intensive care and palliative care are finally coming together in the treatment of patients.

Spending my career presiding over many deaths in the ICU, I would have to be prepared to lose a patient after spending days and weeks trying to save the patient.  This requires a shift in thinking and intent — sometimes a huge adjustment for all involved.  Physicians and other care-givers need training and support to acquire palliative skills and this is being done (finally) at a number of institutions such as the University of Washington.

Jim deMaine is a pulmonary physician who blogs at End of Life – thoughts from an MD.

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