It's an ethical problem when one hesitates, or is impeded in, or has to balance the double effect of, "doing the right thing."
At a recent seminar on end-of-life care, someone asked me, "What can health plans do, to help increase the utilization of hospice services?" Managed care organizations face an ironic dilemma on this issue.
Generally, hospice services are underused. Few patients are referred to hospice, relative to the number of terminally ill who might benefit from such care. Granted, "hospice-style" is only one of several ways to guide and round off the end of one's life. The philosophy and atmosphere of hospice touches intensely subjective chords, and does not appeal to everyone. Yet, thousands who might wish to have the hospice option offered to them are never presented the opportunity to consider it.
More disturbingly, hospice services are underused even by those who want them. Nationally, the length of stay in hospice programs averages three to five days. This discouraging statistic is evidence that large numbers of hospice patients — perhaps the majority — are transferred and admitted in a moribund state. Arguably, the physical, philosophical, and emotional benefits of hospice only accrue to patients who are reasonably fit: That is, those who are in a frame of mind and have capacity to appreciate their environment, and sufficient time in which to contemplate the poignant transition confronting them. A few days is not enough. It mocks the process.
These two facts paint a sad portrait of hospice utilization: "Too little, too late" seems to be standard. What is the remedy? Can managed care organizations help? Here is where it gets complicated.
Hope as an obstacle
The "obstacle" that needs to be overcome for more candidates to enter hospice earlier in the course of their disease is optimism. It takes a special act of will to rotate one's life compass away from the Polaris of hope to point at something that — well — that isn't hope. Many people can't handle this reorientation when faced with it. Many physicians can't negotiate the adjustment in attitude necessary to stay with a patient struggling to accept the end of the quest for a cure, and the beginning of another kind of physician-patient relationship.
Furthermore, this is America. We share a powerful cultural sentiment that rejects the acceptance of death. To many of us, this represents defeatism, cowardice, cynicism, avoidance, surrender, and quitting — among the worst vices in our Western heritage. Even those who may not dread the shame can still feel the condemnation of others. We goad and frighten each other into pressing on: doctor, patient, family, nurse, coworker. Who dares violate the never-say-die rule? Sometimes, a chaplain. Occasionally, the truth comes to everyone's relief, but sometimes it ignites resistance, distrust, and suspicion.
Even beloved spouses or children may find themselves accused of conflicts of interest in the patient's fate. "You're just trying to get me/him/ her out of the way!" Or, "You're just after the money!" Or, "You have no feelings!"
See the problem of a managed care plan joining this emotional tempest? Or a medical director, case manager, or utilization review nurse? Bearing what gifts?
A message of pure beneficence in the circumstance of terminal illness may be, "Get thee to a hospice!" The benefits could be manifold; desire and willingness could be present on everyone's part and the clinical appropriateness might be indisputable.
But here is the paradox: "How dare you suggest/support/imply/accept that there is nothing more to be done?" The kindest advice of a health plan representative is no more credible than that of a distant nephew, and may create far more distrust. The best-intentioned idea — to move beyond futile therapy toward a better mode of treatment — may strike a discordant note. To the hypersensitive it could well be perceived as callous and self-serving.
A hospice representative once confronted me: "Why doesn't the health care industry do more to advance the cause of humane and rational care at the end of life? You know the facts about access to palliative care! You have seen the reports on how poorly terminal pain is managed! You know that sometimes unnecessary and even abusive intensive care is foisted on the vulnerable dying! You know that expert skill and knowledge and caring resides in hospices and isn't being fully utilized! Why can't you help?"
What can I effectively do as a health plan medical director? Unfortunately, I'm occasionally inhibited from some honest and worthwhile advocacy because good motives can be so easily misinterpreted. There are some cynics in the audience who would see that as just another ploy to save money for the health plan. For this reason, it's difficult for me to be a public supporter of terminally ill people going sooner to hospice.
Hands are tied
A new, increasingly heard opinion among physicians pronounces the medical profession too incompetent to give advice in patients' best interests whenever incentives are involved. This view is astonishing and unseemly to me, and to many ethicists. Among other effects, it builds a wall in the path of good care for the terminally ill. It weakens my voice on the subject of appropriate care for the dying. I can't push as hard as I'd like in favor of hospice treatment. Medical directors have been de facto disqualified from this advocacy by another American phobia: Fear of the accusation of appearing to be in conflict of interest.
A doctor treating a person with a hopeless illness needs exquisite sensitivity, strong rapport, sharp clinical judgment, and moral courage to deliver the truth when optimism has run out. At this point, it would be good for a health plan to offer support in every form available.
However, the atmosphere I've described puts irksome limits on the ways in which that is possible.
Sorry, hospice friends, you wise and careful physicians, you studious and experienced nurses, you serene chaplains: Keep up the good work. Managed care will cheer from the stands, and hope the day will come when public awareness and professional understanding will permit a more active role. I can't see the way right now to join you on the field.