Living with Illness: What Care Do I Need?

Every person’s experience of illness, and therefore his or her particular needs for care, is unique to them. What disease you have, how old you are, what your current goals and plans for life are, what people depend on you or care for you—all of these factors will determine the specific needs you or your family may have for the special professional services known as palliative care.

Nevertheless, there are some general concerns that most people with a serious illness will share. Control of distressing physical symptoms and discomfort is one. Help with anxiety, depression, or other emotional and psychological distress is another. Many people will appreciate the opportunity to explore religious or spiritual concerns with an experienced member of the clergy or pastoral counselor.

Most people will benefit from having someone help them with an overall assessment of their situation and needs for care. Quite often physicians who are intent on providing the latest and most effective medical treatments for a particular disease can focus so intently that they, and the patient, can lose sight of the “big picture.” How am I really doing, overall? What are the most important concerns or worries that I have, right now, and as I look to the future? Can we do something about the side-effects that I am experiencing with my treatments? Who will take care of my family if I have to go to a hospital or nursing home for an extended period of time? This sort of “whole-person assessment” is part of the expertise of palliative care physicians, nurse practitioners, and social workers, and they can be very useful resources to the physician who is treating your primary disease. Moreover, the health care system can be very complicated, with many different providers, locations of care, and forms of payment and insurance. It can help to have someone to help you navigate through this complicated system, pointing out and explaining your options, preparing you for upcoming appointments with specialists, and the like.

Most people will also want to make plans for the future, especially advance care planning for medical treatment that might be offered at a time when you, the patient, cannot speak for yourself, either due to the illness or to effects of treatment.

Finally, even after a person has died from a serious illness, those left behind may still benefit from companionship and support in their sadness and grief, and in their efforts to move on in their own lives even while cherishing the memory of the person they have lost. Palliative care includes bereavement support, and many resources are available to turn to for help.