A Role Playing Exercise: Terminal Illness and A Disbelieving Family
The case is that of a elderly mother, in her 70’s, who was found several months ago to have cancer of the pancreas. Unfortunately, cancer of the pancreas especially in the portion called “the tail” has no symptoms or signs that it is present until it is large and spreading. This lady’s symptoms started first with mid-back pain but by the time the cause of the pain was diagnosed, the cancer had spread to other parts of her body. She had seen several cancer doctors and was recently hospitalized and had radiation therapy to the main cancer. Some doctor had told the patient and family, that after the radiation, surgery would be performed. However, when the surgeons examined the patient, they told the patient and family that there was no surgery that could be done. The family, consisting of two sons and a daughter, then tried to get other surgeons to evaluate their mother but none would accept consulting on the case because of an impression by the history that the patient was terminally ill. The family then arranged to have the patient under the care of another general physician and the patient was transferred to that physician’s local hospital. When this new physician reviewed the history and examined the patient, she realized that the patient was now dying from her cancer and probably wouldn’t live more than another week or two. The patient was now sleepy and confused because of her disease and pain medication and did not have the capacity to make her own decisions. The current physician told the family that the patient was dying and there was no further treatment for the cancer available and she should be given comfort care in a hospice environment until she died.
The entire family disagreed with the prognosis and pointed out that they were told that surgery was to be done after the radiation. They refused to believe that no further treatments for the cancer could be performed. They wanted “everything done” and insisted that cardio-pulmonary resuscitation be performed if their mother’s heart stopped. They insisted that the patient be transferred to a cancer medical center in the area. The doctor said she would request the transfer but was uncertain that the cancer hospital would accept the patient for cancer treatments.
Now, role-play that you are a hospital ethics committee member and the physician is coming to you for help with her situation. What would you advise the physician. What more can the current general physician do or say to the family? (By the way this is a real, true life event but the story has been altered enough to protect patient privacy.) ..Maurice.
posted by Maurice Bernstein, M.D. @ 5:31:00 PM
4 comments
4 Comments:
Maurice -
I'd need to know more about the details of the case to make any positive suggestions. For example, why couldn't the surgery the family expected be done? Was it because the patient's cancer had metastasized and was inoperable? And when the family says they "want everything done," what does that mean to them? You mention that they want CPR performed in the event of cardiac arrest, but has it been explained to them what this involves, and what the most likely outcome would be?
Apart from such medical issues, I appreciate how difficult and delicate these situations can be. The real problems can probably only be discerned and addressed through intimate personal interactions -- not from a distance, and definitely not through the application of any textbook formulas.
This is going to sound terrible ... and I apologize in advance ...
If the patient is really "a week or two" from dying, and the family is being unreasonable - there's not one single member who could be steered away quietly, reasoned with, and who could in turn influence the rest of the family - then I would use their desire for a transfer of the mother to a cancer medical center as a means of postponing any actions that would prolong the woman's suffering.
The woman would either pass away while waiting for a denial from the cancer treatment center, or the reply of the center would be another voice of reason which could be added to the physician's - along with the obvious worsening condition of the patient - to try to convince the family to allow the woman to live her last moments in peace and dignity.
I realize that it's not much of a solution ... but I'm not sure what else could be done. It would be criminal to put the woman through any more unnecessary suffering ... but by the same token, beating the realization of her condition into the family won't help, either. What they're doing, although misguided, is out of love and ignorance. Soon enough, the woman's condition should become apparent even to the ones who are the most deeply in denial. We need to remember that while their suffering may not be physical, they are also suffering, perhaps even in agony ... there is more than one "patient" there ...
And now that I've shown myself for the coward that I am, I want to ask you what you would do, Dr. Bernstein?
Bob, to answer your questions, which are all appropriate:
“Why couldn't the surgery the family expected be done?” Let’s say it was because the cancer had metastasized and indeed the surgeons faced with the facts found that the patient was inoperable. Let’s also assume in this case, that the original expectations given to the family was by some physician who spoke out of some general knowledge but inappropriately not fully aware of the extent of the cancer. Such “mixed messages” are a common source of confusion and conflict facing patients and their families.
“When the family says they ‘want everything done,’what does that mean to them?”
Good point. We really must know the answer to this question. Since “everything” to the family doesn’t always mean “everything” from a physician’s view. It is important to understand “everything” since there are misconceptions by the family that can be reversed by compassionate education. In addition, the physician will be educated by understanding the family’s “everything” which may be less demanding than expected.
Let’s say that in this case the family’s “everything” meant primarily a chance at surgery.
They may say “I heard that in some cancers, like from the ovary, if you remove the primary cancer, there is a possibility that the metastases will shrink”
With regard to the request for cardio-pulmonary resuscitation and it’s consequences, the family might say, however unrealistic, “Without any attempt at resuscitation, there would be no chance to have the surgery.”
The new physician had spent an hour with the family, seated in a quiet room in the hospital, trying to explain the facts and why the prognosis was the way it was and why, in her opinion, a former physician included surgery in the treatment plan. But no minds were changed and so she called upon you for help. Is there anything else to learn in this scenario that might assist in recommendations to the physician? ..Maurice.
Moof, sometimes a bit of procrastination, when delay is ethical and unavoidable, accompanied with attention to comfort care may, as you noted, clarify or resolve the issue. Often, when the physicians find further energetic life-support is medically inappropriate in a patient in a terminal condition and the family is demanding that life-support be continued despite the prognosis, our ethics committee may mediate an approach satisfactory to both the family and the physicians: to continue life-support for another several days or a week and then return and re-evaluate. We also try to get permission for "do not resusitate" in the event of a cardiac arrest. Often, what happens is that the patient dies from the underlying complications during this "procrastinaition" period or the family recognizes a deterioration and goes along with termination of life-support.
By agreeing to this "contract" the family is thus acknowledging that there is a potential for an ending. ..Maurice.
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