A Dying Patient, Like Me?
I have a patient who is dying of a disease that I, too, have. I am in an earlier stage of illness than my patient, who is my age, and so when I see her decline, I think of what will become of me. But I also know that I don't want to end up like her.
This patient does not know of my illness. I have told other patients, but not her because she is too angry and self-absorbed to be concerned about anyone but herself. Besides, she is very dependent on me.
Considering her neediness, she behaves in a way that is quite alienating. She is manipulative and demanding at times, she threatens suicide because of pain and, at other times, she threatens to sue me, saying I have "made her" her an opioid addict. She gets angry with me--for example, I do not allow her to get everything she wants (especially when I see she has reached a point where nothing satisfies her).
I watch her act out and blame everything on the insensitivity of others, and I promise myself that I will try not to handle my illness in that manner. When I watch her struggle, setting up obstacles that make her life more difficult, I find myself hoping I can make my decline easier by not fighting the symptoms and not pushing away those who want to help me.
How do I handle this patient? Do I tell her about my illness the next time she accuses me of not knowing how bad she feels? How do I handle my own terror at watching her terrible dying and seeing my own death in the future? Even though I love medicine, I wonder now whether I should continue to practice. Should I even be spending my remaining time struggling with patients who are so challenging? Do I turn her care over to someone else?
When should a physician disclose personal information to a patient, and what do we do when a particular case touches on our own suffering? At a deeper level, how do we deal with our own mortality in caring for the seriously ill and dying? There are no simple answers to such questions.
We have all had patients who push some special button.(1) We need to be aware of our buttons, our reactions and our limits. Often, we can maintain our professionalism simply by becoming aware of these buttons. ("Hmmm, this patient sure reminds me of my father...") Professionalism also requires us to be aware of our limits. At times, we may become overwhelmed and find it difficult to maintain physician-patient boundaries.
Dual relationships present a special problem in physician-patient boundaries. A dual relationship exists when physicians and patients share a strong, nonprofessional relationship.(2) A classic problem exists when a physician attempts to treat a family member. In the case scenario presented here, the physician and patient belong to a family of sorts-- terminally ill patients with a particular disease. Dual relationships are problematic for physician and patient and in this case, where mortality is the issue, great caution is advisable. It would seem that the nature of this dual relationship, although known only to the physician, poses a serious risk to the physician's objectivity. When a physician's limits have been exceeded or when issues arise that threaten the integrity of the physician-patient relationship, the professional response is to facilitate the transfer of the patient to another physician.
Physician self-disclosure can be beneficial for patients with serious, life-limiting illnesses, although care must be exercised to ensure that such disclosure serves primarily the needs of the patient, not the self-serving need of the physician to ventilate. The closer many patients are to death, the more they need human companionship and understanding. Patients close to death can grow tired of an overly rigid adherence to roles in the physician-patient relationship. Who is the person behind the physician's mask? Can this person really understand what I'm going through? Empathy--understanding and identification with the emotional state of the other--can be powerful medicine, especially for the dying. As Suchman(3) points out, "the feeling of being understood by another person is intrinsically therapeutic: it bridges the isolation of illness and helps to restore the sense of connectedness that patients need to feel whole."
In this case, the potential for empathy on the part of the physician is great because the illness is shared. However, empathy refers to identification and understanding of the other. Overly strong identification with the patient could paradoxically block true empathy. Here the physician wrestles with personal reactions, thus prohibiting consideration of the patient's unique experience.
The patient presented in the case scenario would likely be challenging for any physician. She is described as being angry, dependent, self-absorbed and blaming. Such patients often benefit from a team approach. Consultation with other professionals experienced in pain management, palliative care and psychologic support, if available, may help build a support network for the patient and the physician.
The physician implies that the patient is not dying well. She does seem to be suffering mightily and to be ample in her ability to share her pain. In her, the physician sees reflected his or her own terror of dying poorly. It is worth considering what dying well means and what we, as physicians, can learn from it, for at some level we all know that we will die.(4) In caring for the dying we notice that some people seem to die with admirable grace, even beauty, while others seem to do a poor job of it. So, what else is new? Dying is, after all, part of living. Those who die well and those who die poorly have much to teach us. We can see modeled that which we wish to emulate and what we wish to avoid when our turn comes. While we as clinicians struggle to alleviate the suffering of the dying, how people die seems more dependent on how they choose to approach their death than on the medicine we prescribe. This can be scary for physicians, especially if they are attached to a medical model that overly stresses external cures for what are ultimately internal and transcendental problems of living and dying.
It would be unwise to offer specific advice in this case. However, should the physician believe he or she is at their limit or believe, because of their dual relationship, the patient would be better served by another physician, this would be completely understandable.
I am not implying that such a transfer is necessarily the proper course of action. If death were very close, for example, such a transfer might be unduly traumatic to the patient. Should transfer be deemed necessary, the physician should consider disclosing, at least in part, the reason for the transfer of care to help the patient understand that the transfer is not precipitated by personal rejection and does not reflect abandonment. Even with such explanation, the patient may view transfer as an act of abandonment. This is ultimately beyond the physician's control.
If the physician is unsure as to whether the patient would be better served by another, self-disclosure may help resolve the problem. Self-disclosure could lead to a form of "informed consent," making the patient aware of the dual relationship that exists and invite the patient's involvement in considering the risks and benefits of continuing the relationship.
My heart goes out to this physician. Regardless of the decision made, I would encourage the physician to seek support from family, friends and colleagues, if this has not already occurred. Physician colleagues may be particularly important. There are some things it is hard for a nonphysician to understand, no matter how close they may be to us. In our profession, we have done a poor job of supporting each other in the multitude of difficult situations we must face. This case highlights the need we all share for such support. As this case reminds us, we physicians are, after all, more human than otherwise.
JAMES HALLENBECK, M.D.
Veterans Administration Hospice
Care Center, Stanford Hospice
Palo Alto, California
Dr. Hallenbeck's work is supported in part by the Veterans Administration Palo Alto Health Care System.