A study by the Veterans Affairs Medical Center in Durham, North Carolina, shows that the top concerns of terminally ill patients and their families are the following:
- Prevention of pain is most important. People fear dying in pain more than they fear death. These folks need reassurance that pain management is available.
- Patients want to be involved in decisions regarding their treatment. The study doesn’t report it, but it may well be that loss of control or the desire to maintain control are part and parcel of this driver.
- Patients and their families want to know what to expect from the fatal condition and treatment. Again, although not specifically reported, it seems reasonable to infer that removal of a degree of uncertainty about what may help people better cope with their predicament.
- Dying persons and their families search for meaning in their lives and relationships at the end of life. Practicing one’s faith, life review, and saying goodbye were listed as important activities.
- Perhaps interrelated with the previous finding, altruism becomes more pronounced in people who are dying, as the study showed people want to contribute to the well-being of others. They find peace in helping loved ones come to grips with their impending death in order to let them go. They also like to leave behind means to care for the needs of their survivors.
- Patients want to be seen as a whole person, not a disease.
Research from this study and others indicates that it is helpful to talk openly about death and to give your care receiver a chance to talk about death. Thus, doing away with the placebo of denial seems to work more fruitful results. If the patient allows an opening such as, “When I’m gone” or, “I need to get my finances in order,” take it. If the uncomfortable is not discussed, or the chance is missed and it doesn’t come up again, direct questions as to the reality of the situation are appropriate, such as asking, “Are you afraid of dying?” Alsl found to be appropriate are discussions about funeral plans and any advanced directives or other legal matters that have not been completed.
As in other phases of life, arguments with the patient about whether he or she can recover or to remain positive and believe he or she is not going to die are counter-productive. Denial is less than optimal. The study concluded that a care receiver will be more peaceful if their loved ones make it known that they have accepted his or her death and release him or her with love.
- What I’m really thinking: the hospice worker (theguardian.com)