If hospice-type end of life care is thought to be so good and so helpful by such a high percentage of both patients and families experiencing it, why don't more dying people make use of it and why don't those who use it do so sooner? Those questions were the starting point of the deliberations of a small study group of the Increasing Access to Hospice Care Project. The group had been asked to represent a consumer perspective of the issues surrounding some of the apparent conflicts between the social values our society endorses and our access to and utilization of hospice-type end of life care.
Ignorance of the Hospice Care
From the consumer's point of view, the first answer was at obvious. Far too many potential consumers of such care don't even know of its existence. And, of those who do, too many have learned of it too late to make optimal use of its services.
Of course, for some patients, a short stay in hospice is appropriate. Patients with newly diagnosed catastrophic disease and patients experiencing sudden and acute exacerbations of recurrent chronic illness would indeed have brief stays. But many who could have benefited significantly from hospice services far earlier in the trajectory of their dying did not even learn of its existence until far too late. So why don't more people know of it? And why don't they know of it sooner?
The first inclination for several of us was to blame the doctors. Doctors have primary control over most of the basic decisions regarding both whether hospice services should be recommended at all and, if so, when. Doctors, we argued, are committed too strongly to curative therapies. Some are reluctant to inform patients and families even of the possibility of hospice type care, let alone its advantages. They have a professional commitment to the victories of medicine and therefore to the defeat of disease and death. In the case of specialists in particular, often their professional commitment is to defeat the disease itself; too often they are not mindful that the battlefield on which they are fighting is the life of a dying person. And beyond these powerful professional commitments, some, either directly or indirectly, have a financial interest in the continuation of the curative therapies that would, as things now stand, have to be suspended upon hospice referral.
I think it fair to say that all of us felt that this anti-hospice attitude, or at least a strong reluctance to inform about hospice and palliative care, on the part of some sectors of mainstream medicine is a significant barrier to a more appropriate use of hospice type care at the end of life. Efforts to improve doctors' understanding should continue, and use of social marketing to influence the attitudes of those in mainstream medicine should be encouraged. (The use of social marketing might be similar to what is suggested below for consumers.) But several of us felt that medical practice was not the only barrier. For one thing, the attitude of mainstream medicine toward hospice type care is improving. Articles in the professional literature and increasing numbers of statements by medical leaders in public forums indicate a growing favorable attitude to hospice-type care by the traditional dispensers of curative therapy. And yet earlier and more appropriate utilization of the care has generally not improved. Surely there must be other barriers.
Denial of Death: Individual and Cultural
potential consumers--both dying patients and their families--could, of course, learn of the possibility of hospice-type care from some source other than doctors. Hospitals and clinics could provide information and sponsor educational and consciousness-raising programs. Consumers could do some research on their own and initiate conversations with their doctors about advance care planning, including consideration of when hospice would be appropriate for them. Why don't they? Why don't consumers demand hospice care as at least one of the alternatives when they consider what is appropriate for care during the trajectory of their particular illness? …