|Carolyn Vachani RN, MSN, AOCN|
|The Abramson Cancer Center of the University of Pennsylvania|
For many people with cancer, there may come a time when enough is enough. You have every right as a patient to stop treatment or take a break at any time. Patients often feel that they will be "letting their doctor or nurse down". This is not the case. Your healthcare team wants you to be comfortable with your treatment decisions and to enjoy the best quality of life you can. Even when your healthcare team understands, your family or friends may not. They may have seen you get through months of therapy and not understand why, now all of a sudden, you can't do it anymore. Some patients choose to take a "holiday" from treatment, a few weeks or months off therapy. This may make a difference in how the patient feels and allow him/her to restart therapy later. If you are feeling that you have had enough, talk with your healthcare team about your options. A social worker or therapist may be able to help you work through these decisions, as they are not easy.
Many patients and families are leery of enrolling in a hospice program. They may think of this as giving up hope or a place to go to die. Hospice is not a place, but a concept of care, helping patients live each day of their lives to the fullest extent possible, and providing support to both the patient and his/her family and caregivers. Hospice is really a reprioritizing of treatment goals. Whereas active therapy aims to cure or extend life, hospice care aims to provide comfort and achieve the best possible quality of life. Hospice teams specialize in managing symptoms, supporting the patient physically, spiritually and emotionally. They "treat" the entire family by incorporating them into the plan of care. Unfortunately, in the United States, many people are not started on hospice until a few days before their death. The earlier a person receives hospice care, the greater the benefits they receive. Earlier enrollment allows for stabilization of symptoms and time to address emotional and spiritual concerns. It is also important to understand that enrolling in hospice is not a binding contract and patients can be discharged from hospice if their condition improves or they wish to restart therapy.
Palliative care may be an option for some who still wish to pursue active treatment, but could use additional help with managing symptoms such as pain, shortness of breath, nausea, etc. Palliative care is a medical specialty (like oncology or cardiology) focused on the relief of pain, stress and other debilitating symptoms of serious illness. Palliative care differs from hospice in that it can be used at the same time as curative treatment. Not all hospitals have palliative care specialists. Visit getpalliativecare.org to find a specialist in your area.
Some good resources for hospice and palliative care information: