Death’s imminence engenders a plethora of decisions, decisions that for the most part can be made ahead of time. It’s difficult enough to confront these issues before we are dying and while they remain in the abstract. Faced with such decisions while on our deathbed only adds to the emotional turmoil.
Some of these decisions can be stipulated in the necessary corresponding documents I wrote about in my last post. Such decisions include if and when to start or remove nutrition and hydration, balancing levels of pain relief for maximum quality of life, and determining whether one prefers to die at home. Although wanting to die at home often becomes out of one’s control, planning can help facilitate that likelihood.
NUTRITION AND HYDRATION: Many of us equate the withholding of nutrition as starving the patient, or withholding of fluids as forcing the patient to die of thirst. In fact, a patient is often more comfortable when these resources are withheld. Intravenous feeding (TPN) or the use of a feeding tube are not analogous to eating; artificial hydration is not analogous to quenching thirst. While artificial hydration and feeding are indeed helpful for getting through various crises, these considerations are irrelevant when the patient is dying. Withholding these treatment options does not foster discomfort for the patient and may help lessen trauma during the process of dying. In the final analysis, what is most important is the comfort of the patient, secondary is the comfort and peace of mind of his or her significant others.
PAIN CONTROL: Because pain is subjective and difficult to quantify, the issue of pain control and pain medication is often fraught with conflicting attitudes, opinions, and feelings. First, pain tolerance differs for each individual – some of us are more sensitive to pain and discomfort than others. One must also take into consideration drug tolerance affecting levels of alertness. Many patients desire a certain level of alertness – at least enough to communicate – and are willing to adjust their pain medication accordingly while others may want to be less aware. Finding the desired balance for each person is optimal. To complicate matters further, there are the needs and desires of family and significant others who may wish to maintain communication with the patient at the expense of the patient’s comfort. It is important to respect the wishes of the patient and have those wishes take precedence over the needs of others, allowing one at the end of life as much control as possible.
DYING AT HOME: While most of us would rather die at home than in a hospital or nursing home, the end of life is unpredictable and complicated such that dying at home is often out of one’s control. When it is possible to die at home, there are many things to consider and arrange. Perhaps the most difficult decisions revolve around whether to continue treatment and sustain life versus letting nature take its course. The end of life is fraught with unpredictability and the forces of wanting to stay alive often conflict with the desire to avoid the hospital. Everyone making this decision is working through a unique process and will come to a decision in his or her own way. It is the role of caregivers to support and encourage the patient in whatever decision he or she makes. The knowledge and support of health care professionals are invaluable in guiding this final process. Both palliative care teams and hospice programs offer such support and address the many issues involved in keeping a dying patient comfortable. Both provide holistic guidance to help facilitate and realize the wishes and needs of those nearing the end of life and their caregivers. Another post will discuss these vital programs.