A Few Awkward Precious Moments

A brother stormed out of a hastily organized family conference because, “No one cares what I think.”

A brother stormed out of a hastily organized family conference because, “No one cares what I think.”

Hospice is comfort care.

(Those who know anything about hospice will agree with that sentence.)

At the hospice where I work, the mission statement is . . . to uphold the dignity and ease the suffering of the terminally ill while supporting their loved ones, and those who are grieving.

(Other hospices have a similar mission statement.)

What do you want at the end of your life?

Do you desire care focused on “comfort?” Do you hope to be treated with dignity and have your suffering eased? Would you want loved ones “supported” during the time of your dying and after your death?

Your dying.

Your death.

What do you want?

How many think there’s little or no choice in making decisions about their dying? In my years of ministry, whether in rural congregations with so-called simple country folk or in suburban churches with highly educated, high-powered management types (also fairly simple folk), I’d hear people say, “When my time is up, it’s up.” There would be an accident or illness, a natural disaster like an earthquake, a stray bullet, a massive heart attack, and death would come. Eat, drink, and be merry, for who knows what tomorrow will bring. It’s in God’s hands. It’s in fate’s hands. It’s karma.

According to the Center for Disease Control, 2,596,993 died in the United States during 2013.

  • 10 had malaria.
  • 11,208 were shot in a homicide.
  • 584,881 had some form of cancer.
  • 84,767 died because of Alzheimer’s.
  • 3,391 accidentally drowned.
  • 35,369 were killed in a car accident.

We want to die in an instant. We want to die in our sleep. We want to die without pain.

Regardless of your religious faith, or your view about the role of fate, a high percentage of us will sit across from a physician—in an office or a hospital room—and learn we have a terminal illness. We will not die in an instant or without pain. And though we may die in our sleep, there will be months (or years) of wide-awake nights as we struggle with cancers, heart diseases, dementias, or other mean-spirited health issues that will stalk the rest of our lives.

If you glean nothing else from reading this far, please be realistic about how you think you will die.

If you glean nothing else from reading this far, please be realistic about how you think you will die. (Yes, I’m repeating myself . . .)

And then, if you continue to read, be realistic with how you want to live when you become part of the very, very, very, very high percentage of people who will not die instantly and without pain. Since you’re in a realistic, reasonable frame of mind, let the people you love know your thoughts about dying and death. And consider having more than one conversation! What you want at 35 or 50 may be different than your preferences at age 65 or 80. Furthermore, as you consider treatments that may slow or even cure a disease, would you want to continue the treatments if—let’s not be polite—they instead wreck your quality of life?

Because you’re still reading and being reasonable, I’ll mention a 2013 study by Stanford University School of Medicine that found:

Most physicians would choose a do-not-resuscitate or “no code” status for themselves when they are terminally ill, yet they tend to pursue aggressive, life-prolonging treatment for patients facing the same prognosis . . .

Really? It’s only one study. But it’s still enlightening that 88.3% of those doctors in that limited study admitted they wouldn’t want (using my non-medical jargon) to wreck the quality of their life in their final months.

How dare doctors treat themselves differently than patients! Why would they do that?

Because too many patients don’t think they’ll ever be patients. Instead, they’ll die in their sleep. Because too few have honestly considered what they want done when facing a life-threatening illness. Because even fewer have shared those thoughts about preferences with loved ones. Because, frankly, when gut-wrenching decisions arrive, as sudden as an avalanche, it’s hard for you (and me) to be reasonable or realistic.

I wish the family we discussed in our hospice team meeting this week had openly talked about dying and death before their father became a hospice patient. Based on what I heard from nurses and social workers, there were non-stop arguments as siblings disagreed about having more “curative” treatments rather than shifting toward “comfort care.” The father refused to eat, but several children kept forcing him to have food. A sister accused another sister of wanting to murder their parent with overdoses of morphine. A brother stormed out of a hastily organized family conference because, “No one cares what I think.” Their mother—the parents had been married over 55 years—couldn’t share what her husband wanted because she had dementia and only smiled and nodded and reminisced about a trip to Mt. Rushmore. They were a family at war. Cancer might be killing a husband/father, but the battles between siblings were killing a family.

Sorry . . . I concocted the above scenario. We didn’t really talk about that family last week. But, sorrier still, hardly a week passes at my hospice in Fresno, California without a family in conflict about what decisions to make for a loved one’s “best” care. But maybe we’re the only hospice with families that have anguished disagreements?

I get it. No one likes to talk about death.

I get it. All families are dysfunctional and the increasingly limited choices near life’s end can scare or numb or anger even the most reasonable person.

Well, well . . . you’ve read this far. I’m grateful for your time. Now, please consider doing two things. Not for me, but for you.

20130205-123140I repeat again: be realistic about how you think you will die. I repeat again: don’t keep your realistic thoughts to yourself. They shouldn’t be secrets. Instead of setting your family up for a future “civil war,” take a few difficult, awkward precious moments right now and share what you really want.

(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. This is such a great post. Thankfully I have had some of these conversations with my parents but I probably need to document it all so my brother and I have something to refer to especially if things get emotional. It’s not easy to make those choices or discuss them but it’s even harder on those who have to make the actual decisions when faced with the impending death of someone you love.

    I know it was comparatively easier for me to handle Grandpa Harry’s death than my Mom or Aunt Cathi. But I didn’t have to decide anthing; I simply was there to help affirm or be a sounding board. I felt I was morale support. I’m so thankful God timed it so I was in Iowa already when Harry quickly declined.

    The wonderful and amazing gift that Grandpa Harry gave us was preparing & paying for the funeral before he died. That relieved Mom and Cathi by taking somethings off their plate.

    Thanks Larry, wonderful words as usual.

    • Thanks for your kind words, Mikki. Those conversations matter . . . but “documenting” them also can be crucial. It’s amazing how scattered people can be during the time leading up to the death of a loved one. We can suddenly “forget” everything. Having th key, shared decisions down on paper can literally help everyone stay on the same page when tough decisions must be made.

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