Not Ready to Die: Betrayed by Hospice

December 26, 2014
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Belly of the Beast

My blog was covered in dust. Google Docs gathered cobwebs. Now I’ve staggered back to pick up the pieces, gather my thoughts and carry on.

My family was in the belly of the beast. My mother was in hospice.

My mother died December 5th after a few months of declining health. She spent her final three weeks in two hospices. I’m not sure what illness killed her. Or whether she died of a drug overdose. I’ll never know. I am sure her health deteriorated faster because of stunningly poor care.

Belly of the Beast

My blog was covered in dust. Google Docs gathered cobwebs. Now I’ve staggered back to pick up the pieces, gather my thoughts and carry on.

My family was in the belly of the beast. My mother was in hospice.

My mother died December 5th after a few months of declining health. She spent her final three weeks in two hospices. I’m not sure what illness killed her. Or whether she died of a drug overdose. I’ll never know. I am sure her health deteriorated faster because of stunningly poor care.

Past posts have discussed the insurance industry’s refusal to pay for basic relief for dying people, physicians’ indifference to suffering, the social injustice implicit in end-of-life discussions, and the chilling prescriptions in the Institute of Medicine report Dying in America. I should have been prepared.

My mother received callous, negligent care in hospice. I shouldn’t be shocked. I shouldn’t feel blindsided and betrayed. But I am and I do.

The Decision

Mom had mild heart failure and chronic kidney disease. She had severe spinal stenosis that caused fierce pain. She had an autoimmune disease that required high dose prednisone. The prednisone triggered diabetes as it often will. And she was blind, the result of several eye diseases. Not one of these conditions was likely terminal within six months. But taken together they required complex management.

She had ER visits and hospital admissions. The emergency room doc (coincidentally the same one for two visits), the hospitalists, the pain/palliative care specialist and several “case managers” of indeterminate education all advised hospice. I asked each of them which of Mom’s illnesses was likely to be fatal in six months as required by Medicare certification. None offered an answer.

So Mom was discharged to an acute rehabilitation center after a hospital stay. The care was good. She made modest progress.

My mother’s mind was sharp. She understood none of these conditions had cures. She would not get better. The burdens of aggressive treatment became unsustainable to her. Even the improvements in her strength would not be enough to let her ever return to assisted living. She needed too much assistance for assisted living.

She decided she wanted to stop all the “poking and prodding”. She wanted to get up when she was ready, not at the first hint of light. She wanted to do what she wanted to do, not what the rehab folks told her she must do. So we decided to stop aggressive treatment and move to palliative care.

Not hospice. She wasn’t ready to die yet. Mom wanted a slice of peaceful time. To enjoy music, audiobooks and the unseasonably mild late autumn weather.

The Trap

Paula Span writes the “New Old Age” blog for the New York Times. Two years ago she wrote of the choice patients and families face when frail relatives leave the hospital. If there’s little hope for improvement, they no longer qualify for Medicare’s acute rehab benefit. The choice about where the patient can go after hospital discharge is drastically narrowed.

Ms. Span highlights the financial bind for families. One choice, moving to skilled nursing care, a nursing home, is expensive. Medicare rarely pays. Another choice, taking the elderly ill person home, often isn’t possible. The family may not be able to give the needed care, there may not be a suitable living space or the patient may wish not to impose. Hospice is all that’s left.

Adequate resources do not guarantee a good choice. My mother’s decision to shift from active treatment to palliative care meant she could no longer occupy a “rehab bed” in the facility where she was getting good care. Where we would have liked her to stay. She would have to move to one of their long-term care beds. Except they had no long-term care beds available. And didn’t expect to have any vacancies for a year.

The places that had open beds had them for a reason. They’re places no one would put a loved one.

Mom chose to go to a free-standing inpatient hospice that also offered palliative care. It turned out to be a half-mile trip to the most cynical side of American medicine I have seen in a while.

The Terrible Timeline

I don’t know how the legion of health care types all decided my mother was hospice fodder without a terminal illness. Perhaps they used the data analysis dreamed up by Health Catalyst, discussed in a past blog. (Many of Health Catalyst’s key people are former employees of the well-known health care system where my mother was hospitalized.) Maybe the “cost reduction through managing populations” algorithm ended in a Hopeless Case box at the bottom.

Eject to hospice.

Any thought of palliative care was jettisoned early. Palliative care and hospice have become synonymous. I didn’t know the full implications of signing hospice certification for my mother. I had no idea I was signing away any possibility that any physician would take remote interest in her care again. By the time I realized what had happened, she was too sick for it to matter.

The events as they unfolded:

  • My mother was assigned a nurse practitioner as attending “physician” on admission to the facility. I’m an NP, so was comfortable with this idea. Until this NP proved less than expert.
  • My mother developed a raging urinary tract infection from a botched catheterization. After the attending NP proved unable to manage this problem, I asked for a physician to see my mother. Was told no physician was available.
  • I then asked for the hospice medical director to see my mother. Impossible. The medical director lives and practices out of state, almost 400 miles away from the hospice where she has legal, clinical and moral obligations.
  • Requested the medical director’s physician-designee examine my mother. Impossible. No such person existed. All in violation of state and federal regs.Medical Team transport patient to ambulance
  • The facility made a 911 call and my now-delirious mother was summarily shipped to the emergency room. Where the ER doc, with breathtaking arrogance, told me my mother should be in hospice. When I asked whether he’d read the intake notes, he walked away.
  • With Mom screaming in delirium down the hall, he came back to tell the family he would discharge her. I said, “She isn’t stable.” He told us there was nothing further he could do and he would discharge her. “You discharge her and we’ll file an EMTALA in the morning.” (EMTALA is the acronym for Emergency Medical Treatment and Labor Act, a federal law that prohibits hospitals from discharging or transferring unstable patients or women in labor. Violations can incur hefty penalties for hospitals and doctors.) He walked away again.
  • He came back a few minutes later, having found a bed. The palliative care specialist who had admitted Mom earlier in the fall agreed to assume her care on the condition she is discharged to his hospice agency. This physician saw my mother on November 25th, the day before she was discharged. It was the last time she was ever seen by a physician.
  • Mom returned to the assisted living facility where she had been for a year and liked. Now she was a hospice patient and bedridden, the facility was willing to take her back. Go figure.
  • Her care was given by nursing assistants. There were brief visits by a registered nurse. Based on their observations, the doses of narcotics and tranquilizers given to my mother increased sharply and quickly. Requests the doctor call me to talk about the medications went unanswered.
  • Mom was stuporous the last time my brother and I saw her alive, the evening before her death. Perhaps it was disease. Perhaps it was a drug overdose. Or both. We’ll never know. We didn’t say good-bye, there was no chance.

The number of for-profit hospices has risen from 756 to 1828 (that number is likely outdated) from 2000 to 2009. The public education efforts to convince Americans of the desirability of hospices, advance directives and “good deaths”—whatever those may be—have soared along with hospice profits.

My mother did not have a “good death”. My brother and I are left with gut-wrenching questions for which there are no answers.

My mother’s death certificate was signed by a physician who hadn’t bothered to see her in almost two weeks. It lists multi-organ failure as the cause of death. The physicians responsible for her care suffer organ failure, too. The heart.

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