Remediable suffering continues to characterize the end-of-life phase for many, despite improvements in care of the dying in the United States and other developed nations over the past two decades.
In addition to failure to relieve pain and other symptoms, care near the end of life can sometimes exacerbate suffering with little or no benefit to the patient. Additionally, the patient’s physical, psychosocial and spiritual suffering results in adverse consequences for family caregivers that persist into bereavement.
Although what meaningfully constitutes a “good death” will vary with the individual, there is nevertheless broad agreement in Western culture on a number of attributes: symptom relief and comfort, the opportunity for closure, well-being in relationships with family and health care providers, minimizing burden on others, exercising control where possible, the opportunity to leave a legacy, and respect for the dying person, including honoring his or her values.
My research team believes moving into the last phase of life constitutes a developmental transition with specific needs and risks, similar to other significant developmental transitions, such as becoming a parent. Providing effective care to facilitate a good death depends on understanding the process through which patient and family navigate this shift from life-prolonging care to care focused on quality of life and quality of dying.
When a comfort-focused approach to care matches a patient’s goals and values, failure to assist patient and family to make a timely transition increases suffering, truncates the opportunity for meaningful life closure, and subjects patients to futile, unnecessary and unwanted interventions, draining health care resources while adversely affecting patient and family outcomes.
Considering transition to end of life as a developmental process re-envisions the last phase of life from one of medical failure and nothing more to be done or, from the patient’s or family’s perspective, one of “giving up,” to one in which quality of living while dying can be improved and important goals achieved. We have undertaken several projects targeted toward deeper understanding of this transition process.
We have recently completed a metasynthesis study during which we analyzed and synthesized findings from 57 published qualitative research reports bearing on the process a patient and family may traverse at the end of life. The resulting model is based on the reported experiences of patients and family members and informed by the views of health care providers.
Essential elements needed for timely and effective transition included comprehensible information, ongoing emotional support, respect for personhood and some measure of control. The transition process is comprised of two sub-processes of realizing terminality and reframing perception. Positive outcomes can include time to prepare for death, healing and deepening of relationships, and a focus on quality of living day to day.
Two of our other studies, one with palliative care experts and another with nurses working in hospitals, reveal that palliative care providers are slowly changing the culture of end-of-life care and making these positive outcomes more possible, but that much end-of-life care falls far short of what is possible. Too often the last phase of life is characterized by highly sophisticated biomedical care until hours before death and then reflex cessation of interventions and language conveying that “nothing more can be done.”
To continue efforts toward culture change surrounding dying, we plan a prospective, multi-perspective, longitudinal study of the transition to comfort-focused care among community-dwelling elders.
-MARY ANN MEEKER, DNS, RN
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