Thursday, January 3, 2008

Honest Dialogue Key for Terminal Patients

By Aroop Mangalik

    Serious illness and facing death from illness are sad, frightening and painful for all— patient, family or medical personnel. While it is important to strive for the best available medical treatments, it is also important to accept that medical science has limitations and that at some point diseases will be incurable. The acceptance of and dealing with death are difficult for everyone. This includes the patient, the patient's family and friends and, yes, the doctors and nurses taking care of the patient.
    However, not facing these challenges causes more hurt than benefit and prolongs the process of dying and thereby the patient's suffering. Actually, it aggravates and prolongs the suffering not just of the patient but also of the family and the medical staff.
    When to fight and when to accept the inevitable is difficult, and sometimes there is no simple answer. There is, however, one approach which can help resolve many of the dilemmas and reduce anxiety, suffering and alienation of all concerned: communication. If all parties affected by the difficult situation talked to one another openly, honestly and say what needs to be said and hear what needs to be heard, then a lot of suffering could be eliminated, patients could be comfortable until their death and the family can enjoy the company of their loved one with less stress and more quality time. Unfortunately, more difficult the situation, the harder is it for most people to talk about it.
    In this process of non-acceptance of reality— denial, if you will— a lot is lost and there is more hurt. The denial can be on the part of the doctor, the patient or the family. Since autonomy is an important principle in medical ethics and medical practice rules, regulations and "riot acts" would not be acceptable, desirable or practical.
    At the University of New Mexico Health Sciences Center, discussions are ongoing on how to improve open and frank communication between patients, family, doctors and nurses. Systems are being looked at that would, at least indirectly, put pressure on all parties to look at the specific situation of the patient with an open mind. If there are reasonable indications that active interventions would only lead to suffering and prolongation of the process of death, then such treatments would be substituted by comfort measures.
    Continuation of active treatments under such circumstances has been referred to as "futile" by some medical and medical ethics authorities. The problem is that a general definition of futility is not possible, because each patient is unique. However, if a number of qualified professionals agree that the treatment in that patient is futile, then it is reasonable to accept that. Sometimes there is agreement regarding the futile nature of the treatment yet no agreement about stopping the futile treatment and keeping the patient comfortable. In that circumstance some stricter, harsher and uncomfortable approaches have been suggested by different people at different times. (None has had much support.)
    The UNM HSC has ongoing discussions to find a solution to this dilemma that would increase patient comfort, reduce waste of energy and resources and provide more resources for effective health care delivery. We are having discussions within the HSC community and have dialogues with physicians outside UNM. We are also seeking input from all interested parties— medical or lay— regarding how best to reduce burdensome, expensive and "futile" treatments and promote comfort at the time of death.
   
    NAME: Aroop Mangalik
    TITLE: Hematologist and oncologist
    COMPANY: UNM Cancer Center (and professor in the UNM School of Medicine)