Listen to your patient, try to understand what they're saying, and think beyond policies and protocols to be the best advocate possible.
In Clinical excellence in nephrology, the patient story of Mr. K was presented. Mr. K isn’t unique to nephrology, but encountered in all disciplines of medicine.
Mr. K became dialysis dependent due to diabetes mellitus. After three years he developed a debilitating painful condition, calciphylaxis, which confined him to bed with marked challenges to adequately control his pain.
He stated that he “was ready to die,” and sought to enter hospice. He, however, did not want to stop dialysis for fear that his suffering would be worse from “build-up of fluid” with the sensation of drowning. Since his medical decline was considered a direct result of his end-stage kidney disease, he was denied hospice benefits due to his refusal to stop dialysis.
Make time to truly listen
Common to all perspectives offered on this patient story is the need to speak and listen to Mr. K in depth, a task that requires commitment of time and probably repeat discussions—a process that can’t be rushed and maintains Mr. K’s trust that the listeners are truly hearing what he’s saying.
The goal isn’t to change his mind, but to be able to comprehend what he understands and to honestly represent to him care options that he might not fully understand, but which may in fact be consistent with his goals and wishes as long as he has active advocates by his side.
Adapt the system to the needs of your patient
Medical care may have what upfront appears to be rigid choices. This occurs commonly in many different scenarios. We often seem to be trying to place square blocks in to round holes.
It’s easy for us to lose sight of the primacy of the patient and his/her family. In our effort to serve them, we can easily try to adapt their feelings and goals to the needs of the “system” rather than have the “system” adapt to the needs of the patient.
This seems to be the major issue for Mr. K. He states he is “ready to die.” Dialysis is keeping him alive. He would like hospice care but he isn’t deemed to be eligible for hospice unless he stops dialysis which is the therapy preventing death due to kidney failure. He doesn’t want to stop dialysis because he doesn’t want “to drown.”
Crucial to care for Mr. K as his provider and advocate is:
1.) Does he cling to dialysis because he isn’t ready to die, or is he ready to die but can’t face the sense of smothering due to fluid build-up?
This is a challenging issue to sort out requiring sitting with him on many occasions to listen.
2.) If he’s ready to die, but fearful of smothering, then reflecting with him that he can change his decisions as long as he’s able to do so becomes an important conversation to have.
When it comes to conversations with patients about major decisions, I firmly believe that they should have control over their decisions at all times. Decisions should not be irrevocable.
3.) Discussing with Mr. K that “fluid build-up” can often be prevented by dietary measures and that the discomfort due to this can be ameliorated by medications that hospice specialists fully understand and manage daily for patients with multiple medical illnesses, not just kidney failure.
4.) The decision to stop dialysis can be reversed at any time if he should change his mind. He can stop hospice care and resume dialysis if he should find that his suffering has increased as long as he can speak for himself.
Offering and advocating for flexibility
Loss of control and feelings of increased dependency add to the despondency, anxieties, and fear of patients’ suffering magnified by end of life decisions.
To force patients to accept and conform to policies and rules rather than offering flexibility to navigate resources available accommodating care to patients’ wishes as their insight and wishes change dehumanizes medicine.
Care that is comforting and hopefully healing for patients and families should always be continuously supportive and flexible, not regimented to protocols and policies.