Nurselife

Deliver Us From Well-Meaning Care – When a Patient Says ‘No’


“From inability to let well enough alone;
From too much zeal for the new and contempt for what is old;
From putting knowledge before wisdom, science before art, and cleverness before common sense;
From treating patients as cases, and from making the cure of the disease more grievous than the endurance of the same, Good Lord, deliver us.”

—Sir Robert Hutchinson, The London Hospital, England


He was a big man with yellow eyes. Yellow skin, yellow teeth — and a scream that curled my neck muscles into fat sausages.

He was already insane from liver failure, but the enzymes kept rising and the yellow kept spreading.

The heat from the whirlpool water loosened a curl and the tips scraped across my eye, but I couldn’t sweep it back as was my custom, or I’d ruin my sterile field.

I got angry as I pulled him nearer, for he was a prizefighter that day. Nurses had bustled his hands up in mitts, curiously like children’s mittens, to keep him from scratching and pulling.

We lowered the stretcher into the water and he hit me again as his amputated stump struck the water’s surface, and it bled until the water foamed.

He cursed my God and my family and my very breath. I played it simpler and cried.

 

I was 24 years old and this was my first year as a PT. That was 25 years ago.

Truly, I am older now, but not beyond a good sob at a hopeless situation. That man was on death’s doorstep because of kidney and liver failure. He and his family had decided to forgo dialysis. Save for a miracle, systems failure was going to kill him.

And yet, I had orders to immerse him twice-daily in a steamy whirlpool to clean his amputated leg wound.

Within minutes of immersion, his stools would loosen and the water would become contaminated.

“What am I doing?” I yelled to myself. “What are you doing to this poor man?”

He died soon after that, but I haven’t forgotten him.

Perhaps one day I will, but I have my doubts.

The Paradox of Well-Meaning Care

There is a time, I think, when therapy becomes a harm and not a benefit.

Wound care has evolved greatly over the last 25 years. My story, perhaps, is inconceivable to today’s graduates (certainly whirlpooling has gone the way of the Wooly Mammoth).

But there are still times when I feel the healthcare system traps people into participating in therapy when dignity would ask that they be left alone.

When the patient and therapist are on the same page, treatments cannot help but run much more smoothly.

The question then must be asked: how is this state of equilibrium achieved?

There are positive tactics like persuading and incentivising patients.

There are also negative techniques like threats and compulsion. Some people even claim there is a huge “upside to using shame” in therapy.

Even the nicest of therapists use every one of these techniques (“If we don’t finish all your therapy time this morning, I’ll have to come back later this afternoon” is, after all is said and done, a bald-faced threat).

Each technique can be effective in its own way, but researchers have found that they can produce the best results when patients feel respected and made a part of the plan.

So how do we let patients know we are listening?

We let them tell us their story.

Not only does the act of sharing experiences empower and motivate the patient, it results in the treating therapist better able to visualise the ‘back-story’ to the person sitting in front of them.

Persuasion is the technique that most consistently makes patients feel as though they are able to maintain autonomy.

When a patient refuses to comply with treatment, being forced to participate can actually increase their suffering, both physically and emotionally.

Keeping the patient’s autonomy is key to avoiding many problems down the line. Any patient who can be convinced that participation in treatment is in their best interest will likely have more positive outcomes from their treatment.

Of course, this is easier said than done. Research shows that behaviour change is a gigantic barrier to implementing safe and effective treatment for patients.

One technique used with success to persuade patients is ‘the nudge’.

The Nudge

This technique is defined as “any aspect of the choice architecture that alters people’s behaviour in a predictable way without forbidding any options or significantly changing their economic incentives. To count as a nudge, the intervention must be easy and cheap to avoid. Nudges are not mandates.”

Nudging a patient allows the patient to feel as though he or she is making their own decision while being influenced by the wants of the therapist.

So, if we are able to persuade, the question quickly moves to ‘should we?’

When Enough is Enough

By far, most patients desire as much therapy as they can get. Many patients are only in the skilled nursing facility in order to gain that extra therapy to get back to pre-hospitalisation status.

For these people, when rehab discharges them for meeting their goals or perhaps for hitting a plateau, there is often a sense of disappointment and frustration. Don’t you think I need another week or two, they plead?

But there are many patients who have neither the will nor the capacity to work towards “getting better.” They are tired and weary. Perhaps they have cancer or emphysema. To them, therapy is a cross to bear, nothing more.

And yet, they do it.

Why? Because, they know that the moment they stop participating in therapy, someone will start to complain. Many contemplate the financial burden they are about to become—and quiver.

Approach these patients with a cheerful, “Ready to rumble, Elmer?” and you’ll see a slumping about the shoulders, perhaps an audible sigh.

“Not today, please,” they’ll whisper. “Could we just wait a bit? Today’s not a good day. I’ll see you tomorrow. Yes, make it tomorrow?”

If you push, very often you’ll get a concession. They are a genteel generation, not given to public fuss. But you read fatigue across their brow and in the stoop of their shoulders—a stoop that seems to become more pronounced with therapy, not better.

“What am I doing?” you yell at yourself.

A voice inside answers, “Leave him alone.”

And perhaps, it seems, we should.

Show References

References

  • Anderson, L & Delany, C 2016, ‘From Persuasion to Coercion: Responding to the Reluctant Patient in Rehabilitation’, Physical therapy, vol. 96, no. 8, pp. 1234-40, viewed 8 March 2018, https://www.ncbi.nlm.nih.gov/pubmed/26939602
  • Greenfield, BH & Jensen, GM 2016, ‘Understanding the lived experiences of patients: Application of a phenomenological approach to ethics’, Physical Therapy, vol. 90, no. 8, pp. 1185-97, viewed 8 March 2018, https://www.ncbi.nlm.nih.gov/pubmed/20539020
  • Kelly, VC & Lamia, MC 2018, The Upside of Shame: Therapeutic Interventions Using the Positive Aspects of a” Negative” Emotion, WW Norton & Company.
  • McArthur, C, Ziebart, C, Papaioannou, A, Cheung, AM, Laprade, J, Lee, L, Jain, R, Giangregorio, LM 2018, ”We get them up, moving, and out the door. How do we get them to do what is recommended?’ Using behaviour change theory to put exercise evidence into action for rehabilitation professionals’, Archives of osteoporosis, vol. 13, no. 1, p. 7, viewed 8 March 2018, https://www.ncbi.nlm.nih.gov/pubmed/29372344
  • Saghai, Y 2014, ‘Radically questioning the principle of the least restrictive alternative: a reply to Nir Eyal: Comment on” Nudging by Shaming, Shaming by Nudging”‘, International journal of health policy and management, vol. 3, no. 6, pp. 349-50, viewed 8 March 2018, http://ijhpm.com/article_2906_607.html
  • Soriano, MA & Lagman, R 2012, ‘When the patient says no’, American Journal of Hospice and Palliative Medicine®, vol. 29, no. 5, pp. 401-4

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