Note: The details of the story have been changed to protect patient anonymity.
We recently cared for a patient with metastatic cancer to both bone and brain, who was admitted to the hospital due to severe wasting, frailty, functional decline, and intractable pain and nausea.
The patient was told that all cancer treatments have been exhausted. She had been cared for at home by her extremely devoted father, to whom she deferred for all medical decisions. The father has consistently requested that CPR and intubation be attempted if his daughter were to die. These preferences have been consistent and clear after several conversations about the minimal to no chance of benefit from CPR and intubation and the likely significant harms. The father did agree with aggressive symptom management, even if adequate pain control required some level of sedation. The patient confirmed that she agreed with her father’s wishes.
During all discussions where the topic of prognosis has been broached, the father has become instantly guarded, states that they still want all aggressive life sustaining treatments in addition to symptom control, and that the decision is not up to us but to God.
The father has been incredibly articulate about their religious beliefs and the reasons for their preferences. The father stated that he is not in denial, he knows that there are no further medical treatments for the cancer, and that he is grieving as a parent. However, the father also said that in their religion, questioning God or considering any negative thoughts about his daughter not surviving are equivalent to giving up their faith and turning their back on God. The father said “I cannot go there with you.” They expressed frustration at the antagonism they felt from other members of the medical team who were trying to “convince them” to not honor their religious beliefs.
The father also talked about how “man” did not have to make medical decisions because “God will make the final decision for us.” The father discussed examples of other family members who have had CPR and mechanical ventilation. He stated that God made the decision “when it was his time to take them,” and the family members died while on life support in the ICU. This is what the father would want for his daughter.
Several questions have been posed to our Palliative Care team from other members of the medical staff that were hard to answer. “Was there nothing the palliative care team could do to ensure this patient would have a peaceful and natural death?” “ Is it ethical, from a justice and utilization viewpoint, to even offer life sustaining treatment as a option for this patient?”
How would you deal with this situation? Does the case bring up any thoughts or emotions?
Do you think patients and families can request or demand life sustaining treatments, even if we know they will have minimal to no benefit?
What do you think is the best way to honor this family’s religious beliefs?
Would it be the worst thing to code this person and allow “God to make the final decision?”
Can and should we define what is considered a good death for all patients?
By: Michael Cohn and Rebecca Sudore
Comments
But she was clear that, just as we could not give her a morphine overdose to end her life (that would be 'playing God'), we also could not do CPR or implant a feeding tube -- because that, too, would be 'playing God'. As she saw it, she should live and die as God wills, not as man interferes.
I wasn't always clear about the boundaries here, though. Why was it okay to take a medicine that kept her lungs clear, rather than allowing her congestive heart failure to drown her? (Though I'm selfishly glad she did).
One thing not mentioned here is that CPR can be actually deadly in the very frail -- Mom had such severe osteoporosis that she had fractured several vertebrae and at least one rib. CPR would have broken several ribs ... and probably not have given her more than a few days in any case.
In the scenario you describe, I would need to ask the father how many times we should resuscitate his daughter before we concluded that 'God stops her heart' equals 'God decided her life was over' ?
But probably that would be seen as a hostile question.
As palliative and end of life measures are considered it is important that we also begin the deep and emotional discussion of the inevitability of change. Changing from one form of care, that which actively fights disease, to comfort, that which provides for the possibility of the absence of pain and the abatement of symptoms to the degree that it is possible, we have an opportunity to reexamine what is happening with the physical body. Education, with compassion and truth is essential. There are no easy answers to this question, but we must begin with a loving, truthful conversation. Life cannot be preserved just because we want it to be. But Love and Integrity can be, especially at the time of death. Respectfully submitted, Elaine M. Grohman
The patient was young (early 20's), and comatose as a result of an advanced/inoperable glioblastoma. She had been intubated for about a week, and the issue at hand was extubation versus tracheostomy.
The family and their extended support community was fundamentalist Christian, in the context of Haitian culture.
They did not want either option, instead believing their need to decide would be moot because God would deliver a miracle.
The result of an ethics consult and subsequent family meeting was the team's presentation of the shared statement - “Medical and nursing staff have values that guide their decisions, including ‘do no harm.’ We must do what our knowledge and skills direct us to do (extubate). God will intervene, or not, separate from what we do.”
This was an attempt to allow both sets of beliefs to exist at the same time.
It validated the family's beliefs, while also making clear our own obligations.
The idea of ‘honoring and respecting’ a family’s beliefs without question opens the door to malfeasance.
In hospice I have learned the value of a provocative statement: ‘Autonomy is over-rated.’
We have values and obligations that also need to be honored, as well skills and evidence that guide our decisions.
We cannot simply abandon them in favor of the family’s.
We need to find a shared place in the continuum of autonomy/paternalism. It doesn’t have to be one or the other.