My greatest challenge as a chaplain is to connect and then engage with individuals, families and systems. All of which have in operation, the preexistence of established worldviews, culture norms and faith belief systems. My primary function is to facilitate the recognition of spiritual and emotional models a person uses to cope when encountering various situations in life. None are as catastrophic as the discussions of End-of-Life care. Who is the best person to initiate this discussion? What are some of the major challenges and options facing end-of-life issues?
A Basic Guide to Talking About End-of-Life Care
A large majority of patients and close family members are interested in discussing end-of-life issues with their physician. Most expect their physician to initiate such dialogue. But researchers have noted that all doctors agree they should talk with patients about their preferences for end-of-life care, most find it hard to start the conversation. [see news.nurse.com/2014/04/16/time-for-a-candid-conversation-initiating-end-of-life-care-discussions-calls-for-openness-honesty-and-sensitivity].
When these End-of-life discussions do take place, they must go beyond the narrow focus of resuscitation. Instead, such discussions should address the broad array of concerns shared by most dying patients and families: fears about dying, understanding prognosis, achieving important end-of-life goals, and attending to physical, emotional and spiritual needs. Good communication can facilitate the development of a comprehensive treatment plan that is medically sound and concordant with the patient’s wishes and values.
Physicians are trained to maintain health and fight illness, but typically receive little guidance on how to communicate with dying patients and their families. Thus, in our death-averse society it is not surprising that many physicians find it difficult to engage in end-of-life discussions. Generally speaking, Western medicine is all about a cure. This system does not embrace the fact the death is the final stage of life, and the final healer of which perfects the soul in glorification.
Death has long been regarded as tantamount to medical failure, which implies that physicians have nothing to offer a dying patient and family. Physicians and modern Westernized medicine must recognize that quite the contrary is true. Good communication can help allay fears, minimize pain and suffering, and enable patients and their families to experience a “peaceful death.” Unrealistic communication can result in suboptimal care, and patients and their families may be subjected to undue mental or physical anguish.
In an article written by Veronica Haskethal,MD [End-of-Life Discussions: Clinicians Identify Important Barriers, Feb.03, 2015], stated that many hospital-based clinicians consider factors to patients and family members to be more important barriers to end-of-life discussions than clinician and system factors. Dr. and researcher John You, MD expressed the following statement, “The clear take-home message for hospital-based clinicians is that we need really strong communication skills.” “We need training and tools that enable us to navigate-in a sensitive and compassionate manner-the sometimes difficult discussions in which we help patients and families cope with poor prognosis, understand what is important to them, and focus on the things we can do to support these goals, within the bounds of what is medically feasible.”
Holistic Interdisciplinary Approach
End-of-life discussions should address a broad array of issues central to the dying patient and family. Discussions that focus solely on resuscitation fail to recognize important physical and psychosocial and spiritual concerns. Most patients, as they near death, contend with similar fears, needs, and desires. Dying patients experience fear of pain, fear of indignity, fear of abandonment, and fear of the unknown. Open, on-going and direct discussions can ease many of these fears. By involving family members in these discussions, relationships within the family can be strengthened, and can reduce the isolation experienced by the dying person.
As death approaches, many patients have relatively modest needs and desires. When curative treatments are no longer effective, most patients and families desire that aggressive interventions be avoided. They want the last days, weeks, and months to pass without pain, to be spent harmoniously with family and close friends, preferably at home in familiar surroundings. In rare instances, patients and family members may have major disagreements, or futile treatments may be demanded. But in the vast majority of cases, patients and family members are aligned, and end-of-life care can be managed in a sensible and conflict-free manner.
Hospice provides care for the terminally ill person desiring palliative measures. This care is directed toward the patient and family and is provided by an interdisciplinary team. Hospice professionals often refer to this experience as a journey for the patient and family. Most programming provide services in the comfort and familiarity of one’s home, an assisted living or a nursing facility, wherever the patient resides.
Additional sources used in this blog: Journal of General Internal Medicine [v.15(3) 2000 Mar. PMC 1495357], [http://www.medscape.com/viewarticle/839133], [Counseling for Patients, Docs are Failing to initiate End-of-life Discussions. AARPBulletin/Real Possibilities June 2016, page 6].
Grace and Peace
Dr. Alonzo E. Thornton
Chaplain at Hope Hospice of Atlanta