Managing Pain, Managing Ethics
Timothy W. Kirk, PhDAuthor Information
Abstract and इन्त्रोदुच्शन
Noncompliance of family caregivers can present home hospice nurses with difficult ethical choices and powerful feelings about those choices। This is particularly so when family members do not adequately palliate their loved ones, resulting in treatable symptom distress during the dying process. This article presents a case study, moral analysis, and an evidence-based, practical plan of action for engaging family members of palliative care patients on a home hospice service.
Case Study: Edward Cox is a seventy-four year old white male with primary end-stage colon cancer and metastases to the brain and lungs। He lives at home with his wife, Martha, and is a patient of Good Care Home Hospice. Over the past two weeks, he has become increasingly unable to communicate verbally with his wife and the hospice nurse. However, he consistently shows signs of increasing discomfort and occasional bouts of breakthrough pain. His wife does a fairly reliable job of administering short-acting analgesics to address the breakthrough pain. She does not, however, consistently administer the prescribed long-acting analgesia to address her husband's constant and increasing baseline pain and agitation. On several occasions, the hospice nurse has explained to Mrs. Cox that treating Mr. Cox's breakthrough pain, while important, does not sufficiently treat his constant and increasing state of distress, which the nurse believes is a result of insufficient analgesia and resulting fatigue from his inability to rest comfortably. The hospice social worker and chaplain have both visited Mr. and Mrs. Cox several times, and have individually reinforced the necessity of round-the-clock, long-acting analgesia to keep Mr. Cox comfortable. However, Mrs. Cox continues to insist on administering her husband's pain medications "at her discretion". The Cox's hospice nurse is growing increasingly angry at Mrs. Cox, believing that she is essentially torturing her husband as he dies by withholding the prescribed pain medications. There are no children or other family members to bring in to the circle of care, and with each visit she sees Mr. Cox in growing distress, the nurse's frustration and anger grows. To whom does the hospice nurse have moral obligations in this case? What are those moral obligations? What are the options for this hospice nurse? What is the ethically appropriate course of action in this case?
This case illustrates a familiar source of moral distress for nurses: conflict over what is best for the patient (Sundin-Huard & Fahy, 1999)। The nurse both thinks and feels that Mrs. Cox is interfering with one of a hospice nurse's most basic moral obligations to the patient: to provide him with a death as free as possible from symptom distress. Because most hospice patients are dying at home, hospice nurses frequently assume the role of patient advocate by taking on the responsibility of primary communicator between the hospice patient, the family, and the medical team (McSteen & Peden-McAlpine, 2006). When patients experience symptom distress, one of the hospice nurse's primary roles is to seek out medication changes, alterations to care plans, and other treatment interventions to alleviate that symptom distress. When nurses encounter resistance or difficulty, the conflict between what they believe they are morally obligated to do and what the resistance is preventing them from doing creates moral distress (Corley, 2002).
When the source of resistance is one of the patient's family members, hospice nurses are placed in an especially difficult moral situation। In home hospice care, the family is not only the primary source of care and support for the patient; the family is the patient. That is, hospice care is delivered to the entire primary circle of care for the patient, which often includes the patient's family. Indeed, Fisher (2003) notes that research on families involved in palliative care has largely assumed that such families function healthily, and have the best interests of their dying loved ones at heart. Practicing hospice nurses know, however, that this is not always the case. There is little guidance, moral or otherwise, in the palliative care nursing literature on providing home-based palliative care to patients with primary caregivers that are (a) unable to adequately provide support, or (b) neglect to provide reliable support, or, even, (c) actively choose to withhold support for loved ones experiencing symptom distress.
The paragraphs that follow offer one method and justification for intervention that begin with the assumption that the hospice nurse and team have moral obligations that are more complex than the traditional provider-patient dyad model allows. In the case of Mr. and Mrs. Cox, the author argues that the nurse can honor moral obligations to both the patient and the patient's family, even if the outcome results in Mr. Cox dying while experiencing symptom distress.
The intent of this article is to offer a practical, specific, and–where possible–evidence-based plan of action in cases similar to the one above with Mr। and Mrs. Cox. It is unlikely, in such extreme cases, that resolution via consensus will occur. As such, what counts as a "good" outcome–morally and clinically–may not align neatly with the stated goals of hospice care.
The author hopes that this article will open a dialogue in which palliative care nurses and other hospice team members participate, perhaps with the result of generating alternative plans of action, applying different moral frameworks, or formulating research questions to generate much-needed data on this topic।