The word palliate means to alleviate or to moderate intensity. In the context of cancer care, palliative care means to focus medical care or treatment on preventing or relieving suffering associated with serious illness. In the United States, palliative care can be a part of medical care at various times during the course of an illness. Whether it is during the time of treatment or when there are no options for further treatment, relief or palliation of symptoms can be very important to preserving one’s quality of life.
Those who are dealing with treatment for sarcoma may very well understand the need for information on how to relieve symptoms associated with their disease and/or treatment. Surgery, radiation, and chemotherapy may impact one’s ability to do the activities that bring pleasure and enjoyment to life. Therefore, having an understanding of what can be done to palliate (relieve or reduce) symptoms can be very important. Often times the healthcare team providing treatment for sarcoma will be able to alleviate many of the symptoms related to the treatment and/or disease, however, sometimes the symptoms may be particularly difficult to alleviate and collaboration with other experts can provide the needed relief. Increasingly, there are programs, such as the one described by Ms. Mattison and Ms. Szakatis that offer patients and their families access to healthcare professionals with expertise in managing symptoms.
Palliative Care, "Actually there is something we can do!"
A perspective from an inpatient consultation service
by Debra Mattison, LMSW and Kathy Szakatis, APN
Adult Palliative Care Consultation Service
University of Michigan Health System
People with chronic illness often experience both periods of stability and periods of decline over the course of an illness. They may have a variety of treatments, surgeries and hospitalizations over months and years. A time may come for some when they may either say to themselves or hear from a health care professional, "there is nothing else we can do." This is a belief that is often rooted in a focus on one’s physical body and a belief that if health care cannot offer a procedure or treatment to cure an illness or condition, that there are no care options and "there is nothing else we can do."
Palliative Care is a purposefully interdisciplinary approach to care which challenges this narrow focus on the body and the limits of looking at care as only being provided in the context of doing something to the patient. Palliative Care teams often consist of nurses, physicians, social workers and chaplains who seek to use individual and collective expertise to look at the mind, body and spirit needs of patients and their families as they face life-limiting and life-threatening conditions. Palliative Care teams focus on understanding a person’s values and goals, how they define quality of life and how they want to spend their time, energy and resources. They support hope and care throughout one’s life and course of an illness and believe that the relief of suffering at all level---mind, body and spirit---is care that we can always provide. Patients should never have to make a choice between receiving care and receiving no care. Care may range across a spectrum that includes aggressive medical or surgical interventions aimed at curing an illness to aggressive comfort focused care that provides relief of suffering and distress to symptom management for a person facing the end of life. Palliative Care is appropriate at all stages of one’s illness from initial diagnosis to living with a chronic illness to the end of life. Our team is often reminded that although we can sometimes help by doing things to a patient, e.g. tests, procedures, etc., there are times when these interventions are no longer effective, but we can always focus on the things we do for a patient. That something is called "care!"
If you, a loved-one or one of your patients is facing a life limiting or life threatening illness and your facility has a Palliative Care team, consider the potential value of consulting with them to assist you in discussing goals of care, helping with complex communication and decision making around care decisions and expertise in managing symptoms.
Sometimes, palliative care and hospice care are used interchangeably and this may result in confusion. Hospice care, most often means a change in focus from treatment of a life-threatening disease to a focus on relief of symptoms with an understanding that all possible treatments to cure the disease have been exhausted. Palliative care is a major focus of hospice care. Palliative care initially evolved from hospice care, however, it has expanded to include the relief of symptoms associated with curative treatment as well.
Through an initiative called the National Consensus Project, five major US palliative care organizations have collaborated to publish guidelines that provide a comprehensive description of what constitutes quality palliative care. Initiatives of this nature have developed because an increased number of people are living with chronic, debilitating and/or life-threatening illnesses. Sarcoma can be a chronic and sometimes debilitating, life-threatening illness and therefore relief of symptoms is a very important goal.