Waiting too long to call hospice

Over the years I’ve spoken to many people who’ve had a family member spend his or her last days in hospice care. Unanimously, they’ve found it one of the best decisions they could have made. Many of them, however, said they wished they had done it sooner.

Why do people wait to call hospice? Author Paula Span tackles this issue in a guest post on the New Old Age blog for the New York Times.

"Sometimes, simple misconceptions are to blame," she writes.

People may think of hospice as a place rather than a service that aims to let people die in their homes. (A few hospices also operate residences.) Or they think hospice is for cancer patients, though in fact the majority of those in hospice have other terminal illnesses.

And sometimes families have a hard time letting go, Span says.

So even if your physician will sign the form saying that in her best judgment, death is likely to occur within six months if the disease follows its normal course — and that’s all that’s needed to enroll in hospice — often it’s the children who can’t bear to acknowledge that a father probably won’t rebound this time, that a mother is dying.

So families wait. And the parent dies anyway — maybe in pain that could have been eased, maybe with fears that could have been assuaged or lessened had hospice workers been able to offer more than brief crisis management.

 The discussion thread adds a dimension of personal experience and views on hospice care. Not all of it is positive. One person called it "a nightmare from start to finish." Others complained about excessive paperwork and insensitive staff. "All in all, we had no sense our hospice helpers were angels. They muddled through the experience, as we did," one commenter said.

Overall, however, most of the comments were favorable, such as this one:

Our hospice experience was most positive and provided my wife with a pain free, peaceful death. I knew nothing of hospice care before her illness. I am so thankful they were recommended to us.

For yet another perspective, here’s a guest column by oncology nurse Theresa Brown that appeared recently in the Well blog at the New York Times.

The patient, a woman in her 40s, was suffering, Brown writes, but although she had agreed to not be resuscitated if her heart stopped, she and her family wanted her to continue receiving antibiotics and blood products.

What should be done in a case like this? Brown called the doctor "and expressed my deep misgivings with the plan of care." After a conversation with the doctor and family, a decision was made to send the patient home with hospice care.

The ensuing comment thread contains an interesting ethical debate on who should make these kinds of end-of-life decisions. An intensive care nurse writes:

Would I want someone else to determine whether my life was worth saving? I believe that only you can know when it is time, and how much you wish to suffer. The lady in the article obviously knew and was already in pain before she was admitted. Yet, she wanted to live a few days more. You can grouse about the cost of treatment, but I do not believe you can begrudge her her sacred decision to live, despite her suffering. Perhaps at some point she would have given up, but maybe not. But, would you not want that choice?

Brown’s essay sparked almost 300 comments, and the thread is worth the time it takes to read it. The lesson here, if there is one, is that people tend to face death in their own way and their choices need to be respected, even if they happen to conflict with our own beliefs and values.

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