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
12 comments:
When my mother was dying, she insisted that we keep feeding her even when she could barely swallow. Her rationale, as a devout Roman Catholic, was that 'stopping eating' would be equivalent to 'suicide' and was therefore a sin.
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 a chaplain who worked most of his career in cancer care, this is not an unfamiliar scenario. In my role, my first step would be to ask the father to tell me more about his beliefs- not as a challenge but to help me understand him and his family better. Part of what I'm checking out is whether the father actually understands the beliefs of his faith community correctly. For instance, there are several traditions which also believe that God will decide the time of death but draw from that the implication that whether one opts for aggressive treatment or not is a matter of individual choice since that decision will not alter the time of death. This conversation might also then involve bringing in a religious leader from his community. Another part of my experience seems paradoxical but I've seen it over and over. That is, what will free the patient or family to change their minds is having their beliefs as currently stated affirmed and accepted by the team. It is only when they don't have to spend any more energy defending their beliefs that they feel the freedom to change their treatment preferences without feeling that they are abandoning their beliefs at the same time.
I'm also a professional chaplain who has dealt with this type of situation throughout my career, and agree with Chaplain Handzo's comments. I would add that part of the challenge in these situations is demonstrated in the question asked by the team, "Was there nothing the palliative team could do to ensure this patient a peaceful and natural death?" There are times when we need to remind ourselves that the definition of "peaceful" comes from the patient and family and that we honor their beliefs and values even when they do not coincide with ours. In this situation, the "peace" appears to come from the patient and daughter wanting to stand firm in their commitment to how they understand God's actions in their lives. I don't hear him "demanding", but rather asking the team to stand beside him as he tries the best he can to manage both his faith and the overwhelming grief in facing the death of his daughter. If I were the chaplain on the palliative care team, I would listen to him, affirm his desire to be faithful to his beliefs, and acknowledge his grief. Perhaps he would changes his mind about DNR status; perhaps he wouldn't - but in the end he needs the support of the team whether we agree with his stance or not.
As another board certified chaplain, I agree with George and Sue. The intervention of highly skilled providers (chaplains) should be available in all acute care settings. Also, as a bioethics consultant I submit such cases should stimulate renewed conversation about our number one oath to the patient, do no harm. Having been in this type situation many times, I feel many providers facilitate treatment which will do more harm than benefit. This moral timidity and ethical dissonance exhibits in recent shifting from “futility” language to “waste avoidance” language (not to use the R word). Western theology and theologians have exacerbated the issue. They have not confronted the “greater god” of medical technology as it overshadows the absolute finitude of humankind. Our cultural backbone seems very fragile at the challenge in discovering value, finding meaning and maintaining hope in facing death.
In my experience as a chaplain with a Pain and Palliative Care Service, each family has a narrative in mind of what their loved one’s death might look like, informed by their belief system. The medical team needs to honor and respect the wishes of the family, even when it seems that treatment is “unnecessary” and potentially harmful to the patient. This goes to the very core of trust that has been placed in the hospital and in the medical personnel. The intimacy of dying and death demands the same attention and support from us as the act of birth. As has been stated in this forum already, Listening to the family, Affirming what they want and believe, and Accepting and Honoring their wishes, is what we owe our patients and families, in my humble opinion. Chaplains provide this care every day, everywhere.
Thank you for this important discussion. Although I am not a chaplain I have been involved in hospice work and have had this discussion with clients and their families. As death approaches we are brought squarely to our own frailty. Wouldn't it be wise if we were always aware of that constant truth?
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
We cannot choose for our patients; each family's belief system is unique and should be respected...we can educate, however we must accept that there are some patients and families who cannot completely align with the concepts of palliative medicine. I do think there is a respectful way to ask the "how will you know when God has decided?" question, and it's reasonable to agree on a plan for the time when the heartbeat stops. Many times, i find that the desire for full code is tied up with guilt in one form or another; families wanting the loved one to linger so that they can make amends/show their love. Sometimes when this is addressed, the family members can let go. It's such a difficult thing to release a loved one if there is unfinished business.
The intimacy of dying and death demands the same attention and support from us as the act of birth. As has been stated in this forum already, Listening to the family, Affirming what they want and believe, and Accepting and Honoring their wishes, is what we owe our patients and families, in my humble opinion. Cialis Online
The real question I think, is attempting CPR and invasive treatments is the Playing God if the patient is terminal stages of cancer that did not respond to chemotherapy? I don't know but I am trying to think of it from the patient's family perspective and than look at it from the flip side. Just because medical interventions are available does not mean that every body should have them. I would argue that the patient's CPR should be analogous to having any other invasive surgery. For example appendicitis: if a patient has appendicitis and is healthy and needs the procedure and can tolerate than we should proceed to a surgical intervention. However, if a random healthy person decides they want their appendix out we should not offer the treatment and should be considered medical malpractice to do an invasive procedure that is not indicated. Maybe CPR should be the same way for an individual most likely at the end of their life, maybe they should not have the buffet of options for medical treatment. Why can an critical physician not refuse treatment if most likely not going to be beneficial such as a appendectomy on a healthy patient? Maybe a little extreme but food for thought?
I'm struck by the similarities of this case to one I experienced as a staff RN in a neuroscience intensive care unit.
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.
While I believe medical professionals must go along with what their patients (or their patients' close relatives) want with the treatment, I think it would be a lot more ethical if they offer the shorter, less painful method of dealing with it. Sometimes religious beliefs get in the way of keeping a patient comfortable on his last days, or in giving him the right to pass on.
I think this is still one of those seriously difficult "grey areas" medical professionals have to deal with everyday. Physicians have to be torn between adhering to their medical ethics and following whatever their patients' wishes would be; saying that it would be on a "case-to-case" basis wouldn't make the argument any lighter.
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