Abstract
J
Jan didn't have the look of the very sick. While the disease was rampant, she didn't have that sallow wasting look. When the consultant entered her room she was sitting up in the bed, her face full, her color good, and her voice strong. She was speaking softly to her brother Tom. A 33-year-old woman approaching death? Of this there was no question. But she in no way seemed nigh unto death. And if this was the case for the consultant, how could it be different for the patient? When the force to live is so strong, and the disease is hidden deep within the body, revealed only in shadows on computer screens, of course there was a thrust to deny this terrible reality. If not intellectually, certainly on an emotional level.
Jan and Tom look towards the door—yet another intruder, a woman in a lab coat.
She is here, no doubt, to continue where the other doctors have left off.
“You want to speak about hospice,” says Tom, who declares his standing as Jan's legal health care proxy. “We don't want hospice,” continues Jan. “It's not time for hospice; I want to go home. When it is time I'll say yes but it's not time now.”
Of course they are right. The consultant is here to talk about the plan for hospice. But unlike the doctors who came before, she sits rather then stands over the patient in her bed, and makes it clear that she is also here to listen. As she listens it becomes clear that denial is hardly the main theme, if it's a theme at all.
Tom begins to speak. The consultant turns to the patient. She wants to hear from Jan.
“I've been in treatment for two years with uterine cancer. It spread and there is nothing more that can be done,” she says with sadness, resignation, and the sound of acceptance. “I know I am going to die, that I will need hospice, but not now. Right now I want to go back home at least one more time before the end.”
What is she not getting? Where is the denial? She knows the diagnosis, the prognosis, and speaks to her own death. Still, there is the refusal of the hospice referral. She and her brother explain concerns based in experiences with their parents, who were overmedicated on hospice. They explain their fear, based on misinformation, that it's not possible to go from home hospice to an inpatient hospice setting when being at home becomes too difficult. When the consultant has cleared up some misconceptions and misinformation, they say they will consider the hospice referral.
Maybe it's the doctors who are in denial. They now have information about why their patient is saying no to hospice, yet they continue to talk about her being in denial. They say she is “passive aggressive.” What are the doctors not getting? Is it beyond them to consider that just because a patient will not consent to their recommended procedures it doesn't mean that the patient is in denial. Jan knows she is dying. Can they understand that there may be more than one algorithm in decision making?
The goal of discharge to home is settled but there remains the problem of how to make that happen. There is another family meeting with Tom, the doctors, and the ethicist. Jan is too sick to attend. The conversation is difficult. The physicians insist that they cannot, in good conscience, discharge Jan unless she has another procedure to open the clogged nephrostomy tubes that were recently placed. If she leaves the hospital before that it will have to be against medical advice (AMA). Tom, feeling the heavy-handedness of the AMA threat, becomes angry and cynical about the hospital's motives for demanding yet another procedure. Why were these tubes clogged? An incompetent doctor? Does the hospital have an economic interest in doing the procedure? And finally there is the matter of pain, which has not been adequately controlled. That's what we should be talking about. Not another surgery!
Contradictory and contentious communication is evident. There is a need for the doctors to see their patient and her brother through the lens of their labels—i.e., they are in denial, their behavior is passive aggressive, they are this, they are that. The consultant tries to bring the discussion back to the goal of getting Jan back home. The doctor and the brother keep getting mired in technical questions that have no answer. Finally, Tom says in exasperation, “I just want her to have a little break, a little fun. I want Jan to go to Atlantic City one more time, laugh a little, play a few slot machines.” There is silence. And then the consultant speaks. “Tom, from what I understand the doctors are telling us, Jan is not going to be able to get to Atlantic City again.” As she says this, the grief of impending death fills the room. And there are tears, the ethicist's, Tom's, the doctors'.
No one planned to cry; but there it was. Underneath the anger, grief needed to find it's voice. It wasn't all smooth and easy after that. But there was a change. No more labels of denial, no more family mistrust of doctors' intentions, only one single purpose of getting Jan back home for as long as she could be back home. And that is exactly what happened. After a long hospital stay, this terminal patient with metastatic cervical cancer returned to her apartment with the support of hospice.