Is STUBBORN a Diagnosis in Hospice Care?


Humans are loving, and yet we can be hateful . . .

Humans are helpful, but we are also irksome . . .

Humans can keep learning, though we resist change . . .

In Joan Halifax’s Being With Dying, she related this account:

World religions scholar Huston Smith once told the story of a well-known psychologist, an ornery old man close to death. One morning, as he was struggling to get to the toilet, a nurse tried to help him. He snapped back at her, “I can do it myself!” Then he dropped to the floor dead.

Smith used this story to illustrate just how defensive about needing help we are often are. He called this reaction ‘the porcupine effect.’

I agree with Smith’s “porcupine effect,” or in other words: Don’t touch me! Over the years of working with those close to death (and those caring for them) I have frequently heard a variation of the phrase: how you live is how you die. That may not be as true when death happens because of a car accident or an earthquake, but still . . .

During life, some are ornery—stubborn and as prickly as a porcupine—like Smith’s “well-known psychologist,” and that’s exactly what they are like when approaching death. All humans are many things. Gentle. Crude. Fearful. Talkative. Stoic. Finger-pointers. Self-deprecating. Calm. Anxious. Generous. Miserly. The list of the ways we describe ourselves, or others describe us, is lengthy. But we’re never one thing. We are a simmering stew of emotions, a tossed salad of reactions, a buffet overflowing with contradictions. But I think a very high percentage are stubborn. We are gentle, kind, and stubborn. We are fearful, secretive, and stubborn. We are self-deprecating, touchy-feely, and, yes, stubborn.

  • Don’t help me.
  • I don’t want your assistance.
  • I can do it on my own.
  • Leave me alone.
  • You can’t make me do it.

We offer an arm for support, but the gesture is refused as our friend continues to stumble forward. The hospice nurse suggests a rented hospital bed could be more comfortable for the patient and easier to manage when going to or coming from the bathroom. It also, she may gently point out, is safer for those caring for the patient. But patient won’t consider it . . . I want to sleep in my own bed, thank you very much! And delete the thank you in some cases.

Or maybe a family member prepares a simple meal—soup and cheese and easy-to-digest crackers—and then lovingly asks if the parent or spouse would like help being fed. No! Soup spills from the spoon before it hits the lips. Cracker crumbs cover the table like unraked autumn leaves. The cheese is never touched. An effort to make a meal simple for one ends up creating hostility and stress for everyone.

Isn’t stubbornness part of our DNA? Have the scientists—both the compassionate and the cold-hearted ones—mapped that specific human trait? But is research necessary to prove that the majority of us are cranky and ornery when it comes to requesting or wanting any help?

Not able to ignore the ongoing national anguish over the brutal, public death of George Floyd in Minneapolis and the now months-long restrictions attempting to stop/slow the spread of Covid-19, how does human stubbornness impact the deepest wounds in our society? How can any hopeful changes be made with individual or institutional racism when we are so resistant to change? How can we trust information about the “best practices” for a global pandemic when we stubbornly cling only to selective facts that make us feel right or even superior?

Political and cultural rant over, but still . . .

Will dying change the “ornery gene” in most people? As the flesh weakens and the muscles waste and the bones creak and the hearing fades and the eyes dim, wouldn’t it be okay to have a smidgen of assistance?

  • Yes?
  • Maybe?
  • No?
  • Why not?

I probably won’t practice what I preach. I’ll be a lousy (er, stubborn) patient.

How about you?

I think, also embedded in that real or imagined DNA, is a magnificent will to live, a primal desire to keep thriving. With or without help, would that “well-known psychologist” have died before his fatal journey to the bathroom? It’s possible. We may grin at Huston’s story, we may say that would never be me, but I see myself in it. As much as I’m okay with some of my stubbornness—and some of your stubbornness—I also hope I can change as I get older and feebler, as I approach the time of dying. Maybe, when someone offers help, I’ll grit my teeth, roll my eyes, grumble loud enough to disturb others in the room, and say,

Yes. Thanks so much. I do need a little help.

(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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  1. I’m reading this out of sync but it did strike a cord with me. As a caregiver I learned some things about dying I didn’t expect. My dearest friend was always kind and generous to a fault. However, when she realized she was slipping away, there were ways she could manage to keep some sense of power over her life. I learned them and played them – in other words, when she needed to be in control, I really did make it easier for her to do so.

    HOWEVER – she had a UTI which required hospitalization. As we all know, hospitals try to get you out way before it’s time and so most people end up in RE-HAB. BTW, I have come to disdain RE-HAB with a passion. My friend was sent to re-hab. In one way it was convenient for me since I was teaching summer school and did not have to hire someone to be with her while I was gone. But that stay in RE- HAB cost me plenty.

    I visited her daily after teaching and I noticed she was getting weaker, not stronger. I took a day off school to figure out what was happening. It didn’t take me long to find out. One of the ways my friend exerted control was at meal time. She would ALWAYS refuse a meal and then a few minutes later let me know that maybe she could eat a little. Well, no one at the RE-HAB played that game with her. She said she didn’t want to eat and they threw her food out. I was totally upset about this turn of events. When she was weighed I discovered she had lost 60 lbs in her stay at RE-HAB! Of course, I complained. The answer? “We don’t have enough people to make sure everyone eats if they don’t want to eat.” WHAT???? Well, I pulled her out of re-hab as fast as I could. She never regained the weight she lost but she was able to regain her sense of self worth even if it was through a game we played daily.

    My advice – Listen with the ear of your heart – what is your family member REALLY saying? What is your friend trying to do? It may not always be what words are said.

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