One of my patients is 91 years of age, resides in a nursing home and is bedridden and noncommunicative. She has been more or less unresponsive for the past two years. The physicians who previously cared for her did not think intubation or hospitalization for acute problems were appropriate for this patient. The general consensus has supported palliative care. The daughter, who has power of attorney, has resisted the physicians' opinions. She has changed physicians every few months because she disagrees with the medical community about her mother's code status and hospital transfers. The daughter is in her 50s and spends four to six hours daily at her mother's bedside. Some nurses have said that they think the daughter is angry with her mother for a past hurt and that keeping her alive may be her way of punishing her mother.
Now it is my turn to wrestle with the situation. The daughter came to me a few months ago and asked to transfer her mother to my care. I told her that I had heard about her mother and that I shared the prevailing view of nonintervention. I explained that I would provide palliative care but did not think other interventions were warranted. At this time, the daughter agreed with this approach. However, the very next day, she called to ask that her mother be hospitalized for a cough. I visited the mother in the nursing home and, fortunately, the cough turned out to be minor. I know that I will soon have to make a drastic decision if the mother takes a turn for the worse. When I try to talk to the daughter about the situation, she lifts her eyes up at me and says, “But I just want what is best for mother.” What can I do?
The family physician submitting this case is to be commended for wrestling with a very difficult problem. The patient's family physician has taken an appropriate first step in the management of this situation by setting boundaries through a verbal contract about limits in providing care for the mother. A more formal step might involve the physician writing a contract outlining those limits and asking the daughter to sign it. While legally nonbinding, it carries more symbolic weight than an oral contract and might even provide some legal protection if litigation were to become a consideration.
In either a verbal or written contract, it is essential to establish mutual goals of treatment.1 A lack of clear treatment goals is a common cause of conflict among treating physicians, family members and patients. Based on the information given, it appears that the daughter does not agree that the goal of caring for her mother is palliation. Too often treatment itself becomes the goal rather than the means of facilitating palliative care.
A way to clarify the goals of therapy in this case might be to ask the daughter what she means by her statement, “I just want what is best for mother.” Does she mean she wants her to live a long time? Is she worried that her mother will experience pain from coughing that she thinks only antibiotics can alleviate? Does she want her mother hospitalized because she might receive more attentive care there because of more favorable nurse-patient ratios? Does she think medical care overall is better in the hospital than in the nursing home? Does she have information her mother conveyed to her in the form of a verbal advance directive that is influencing her requests for treatment that the physicians deem futile? Does she have religious beliefs that prevent her from being comfortable about withholding any treatment? Until there is mutual agreement about the goals of therapy and the acceptable means of reaching those goals, it seems likely that the daughter will continue to have conflicts with any treating physician.
Based on this discussion alone, it may be easy to clarify the point that any treatment should serve specific goals. It is often helpful to list the goals in decreasing importance, and in this case they might be: (1) keeping the mother comfortable; (2) keeping the mother free of pain and minimizing blood draws and intravenous lines; (3) providing only natural nutrition that the mother can take on her own without tube feedings or intravenous lines; (4) keeping the mother's medications to a minimum; and (5) keeping the mother out of the hospital. When the mother has a clinical change, such as a cough, these goals can be useful in guiding the decision making.
If the daughter's primary goal of treatment is to maximize the length of her mother's existence, a helpful step is to explore how prolongation of the mother's life has meaning for the daughter. What does her mother's continued existence as a living human being, albeit an unresponsive one, mean for the daughter? While the mother may not be responding verbally, she may be responding to the daughter physically, perhaps squeezing her hand or smiling in response to verbal stimulation. What does the daughter gain from the time she spends with her mother? Is the mother the daughter's only living relative? Any one or a combination of these factors may be preventing the daughter's emotional acceptance of palliation.
Even when a verbal or written contract is established that includes agreement about the goals of therapy and the accepted means of reaching those goals, conflicts can still occur. If conflicts do occur, the contract should be reexamined to determine if there has been an evolution in thinking about the particular goals that the physician and the family had agreed on. If, in this case, it becomes clear that the daughter will continue to push for treatments the physician is uncomfortable providing, there are ethical grounds for refusing to provide a requested treatment if there is no reasonable expectation of benefit.2 In such a circumstance, it may be necessary to help the daughter identify a physician who shares her same values and treatment goals for her mother.
Hospice is an important community resource for physicians providing palliative care. While some hospice programs have restrictions regarding a patient's location, some programs will provide hospice care in nursing homes. If the local hospice won't accept nursing home patients or if no hospice facility exists in the immediate area, a hospice worker might be able to provide telephone consultation or even accept the patient intransfer in a nearby community with a hospice facility.
The daughter's ambivalence about her mother's death, the long hours spent at the mother's bedside and the staff 's second-guessing of the daughter's motives are cause for concern. It appears that there may be unresolved mother-daughter relationship issues that form a significant impediment to the daughter's acceptance of a palliation regimen. Failure to explore the daughter's psychosocial issues could foil even the best-executed contract of care.
When family members refuse to let terminally ill loved ones die, health professionals providing care for the patient may too easily interpret these actions as malicious. The daughter's regular presence at the bedside argues against the daughter trying to punish her mother for remote actions. Rather than presume guilt, it seems more appropriate to assume that the daughter's intentions are noble, even if perceived to be misguided by some health care providers. In these types of circumstances, it is far too common for health professionals to “blame” a family member for obstructing a palliative approach that would maximize the patient's quality of life. Family physicians may have a role in preventing unintentional but malicious labeling by other physicians or staff.
Constructing a family genogram could identify underlying psychosocial issues that are interwoven in this case.3 Perhaps the mother is the only living family member the daughter has left. Alternatively, the daughter may have estranged relationships with others in the family. It is likely that a family genogram would identify one or more issues that could lead to resolution following intervention by the family physician or through referral to a social worker or mental health specialist. (For example, the daughter may be depressed and might benefit from treatment.)
If all of the efforts discussed here fail and the family physician strongly feels that the daughter is causing harm to the mother, a final, albeit Draconian option, might be to seek a court order to revoke the durable power of attorney. Because no significant harm seems to have been caused by the daughter's actions, it seems unlikely that a court would take such action. However, depending on the circumstances, such intervention could become necessary.
In summary, this case illustrates a common problem in family medicine—the health circumstances of two family members affecting each other. Based on the information provided, it seems that palliative care for the mother is appropriate from a medical perspective, although it may be less acceptable from a psychosocial perspective. The family physician can play an important role in caring for both the mother and the daughter. Identifying the daughter's goals for treatment and exploring psychosocial issues are crucial steps in resolving the stalemate between the daughter and her mother's doctors.