Yes, Some Leave Hospice Care

The Seventh Seal

As with the stark chess game in Ingmar Bergman’s classic The Seventh Seal (1957), death doesn’t lose.

We got rid of a few people in hospice this week.

Oh, and several lovely, beautiful patients also died. More on death in a moment.

I attend several of my hospice’s interdisciplinary groups, which are usually called IDGs. They are weekly patient care meetings, a required review of those under the care of our agency. Since all patients in hospice much be reviewed by the hospice team—led by a physician—every 15 days*, we discuss and update the needs for everyone in the course of a typical month.

Some patients are relatively stable, and can go for weeks and months with minimal input.

There are “focus patients” with issues—family conflicts or finding the right medication dosages or ________ (fill in the blank)—that must be immediately addressed.

There are new admissions to discuss.

Quite a few patients need to be recertified. Is this patient still hospice appropriate? Every few months (there is actually a precise schedule), this question will be asked and answered. Hospice care is for those with an illness giving them six months or less to live. There are always patients that continue in care over six months. However, like everyone, they will be routinely reviewed.

With some, still alive and kicking, we bid adieu.

In a recent week, a patient transferred to another hospice. Apparently, the family was disappointed with us. Though professionally tough to admit, a hospice agency will never meet every need of every patient. Truthfully, it can be an agency’s fault when . . .

  • Pain medication arrives late.
  • The wrong medical equipment is delivered to the home.
  • A social worker promises to visit at a particular time with a particular form, but comes hours late without the document.

These examples are upsetting and do happen. Like most institutions, a hospice agency has numerous “moving parts.” What if the medical equipment company delivering the oxygen botches an order? Should hospice also be blamed? Whatever the mistakes, if there are too many of them, or too few apologies and explanations, patients may soon seek a different hospice.

There are also issues when a patient or caregiver have unrealistic expectations. What if a family wants their beloved grandma to have a top-of-the-line hospital bed? Doesn’t she deserve the bells-and-whistles? But the hospice agency, financially constrained by Medicare’s guidelines, responds that the benefits won’t cover the costs for the “best” equipment. While not the hospice’s fault, the family may leave that hospice and also speak poorly about their services.

I could describe even worse situations. While all families are dysfunctional, the time of dying can bring out the extremes. There are those who immediately complain or never trust the answers that any institution gives. I have known about patients that transfer from hospice to hospice, lugging along their conflicts like beat-up suitcases. A hospice, oriented toward helping the dying have a peaceful death, can do little to help an always-angry family have a suddenly peaceful life.

On a more upbeat note, patients may decide to have a medical procedure or treatment beyond the scope of hospice care. Hospice is about non-invasive comfort care. While some medicines or surgeries may not cure a patient, they could extend and possibly improve a person’s remaining days. And so, a patient can easily leave hospice for those options.

There are patients whose health improves through a hospice’s care. While they have a life-limiting illness, the compassionate presence of a hospice team can improve a person’s well-being. The patient leaves hospice because, for good reasons, they no longer require that level of support.

Hospice does, er, get rid of people! Sometimes for difficult and sad situations. But there are also various positive reasons.

Not all of our lovely, beautiful patients will die in hospice.

With a dash of humor, we might say they have graduated.

Nonetheless, death will come. As with the stark chess game in Ingmar Bergman’s classic The Seventh Seal (1957), death doesn’t lose. With functional or dysfunctional families, I wish I could magically cause everyone to have honest, open conversations about death. And my second wish is that it happens long before a doctor states that someone you love or hate (or both) has six months or less to live. However, I understand why we don’t talk, or even mention, our deaths.

I carry around personal fears and doubts that I’d rather avoid:

What does happen after we die? I am a Christian. How I was raised, my education, and over forty years of ordained ministry have influenced my beliefs. In simplistic terms, I don’t take the Bible literally, but instead seriously. My view of Jesus is that he talked less about a future paradise, and more about loving today’s neighbor. Some Christians seem to claim there’s a check-list of certain beliefs (based on their particular interpretations) that will “guarantee” eternal life/salvation/heaven vs. hell. I am not one of those Christians.

I don’t want to depend on others. My wife and I don’t have children. Who will take care of me? But even if we did have kids and grandkids, this “fear” of mine is somewhat universal. I am not unique in my resistance to losing the “little” personal freedoms of eating when I want, going to the bathroom on my own, and so forth.

Has my life mattered? The is me at my vainest! I spent decades as a pastor: preaching, teaching, trying to inspire others to deepen their faith. And yet did I really do much? I have also spent considerable time writing, with the goal of publication by established New York publishers. Instead, there were endless rejections from literary agents and editors. I had hoped to make a “big” (okay, modest) difference with my words. Nope. Never happened.

There are more fears (including ones more mundane and troubling) that I could share. But the above three are sufficient for my point. Hospice care, which at its best is one of the best things we have created for us fragile, foolish humans, confronts us with our limits. Which can be scary.

We all want to live! When a hospice disappoints us, isn’t it inevitable that some will transfer to a “better” agency? Or others, maybe learning of a new treatment, will leave hospice to see if they can live longer.

And yet who doesn’t die? Who shouldn’t openly share their fears without fears of judgment?

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*From page 18 of the Standards and Practices for Hospice Programs: “The plan of care is reviewed and updated at least every 15 days or more frequently as indicated by changes in the patient’s condition or family circumstances.”

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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Comments

  1. Or because the faith healer they hired declared the patient better and was going to walk out of there.(she died the next day) What a reason to leave hospice then blame us for the terrible death that occurred.

    • Steven:

      Ah, a “faith healer.” Thanks (mostly!) for sharing this! While I know that a hospice agency or its staff can be “blamed” for some things, we are also “blamed” for far too many things that we don’t have any control over . . .

      Take care!

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