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Most people are unfamiliar with the term “palliative care” and often confuse it with hospice. Palliative care and hospice services work with people who are dying. However, palliative care can be provided at any point during treatment of a serious illness.
Palliative care uses a holistic approach to ease suffering and promote quality of life for people with serious and chronic illnesses, such as heart disease, kidney disease and cancer. This can include addressing symptoms such as pain, nausea, lack of appetite or shortness of breath. Palliative care teams also help patients and loved ones process feelings associated with being ill, such as sadness, anger, frustration and worry. Another important part of the work involves making sure patients and families understand the nature and state of their illness, so they can make informed choices about care.
Our team at MedStar Washington Hospital Center includes doctors, nurse practitioners, pharmacists, a chaplain and social workers like me.
Palliative care is a relatively young field of medicine and we are still getting the message out about what we do. So we understand when providers, patients and families don’t know how we can help or are hesitant to consult us because they think we only work with patients who are dying. I’ve compiled a list of three common misconceptions about palliative care in the hopes that it will clear up misgivings people have about seeking our assistance and clarify how we help patients at all stages of serious illness.
1. Are you here because my loved one is dying?
This is a question we sometimes get when we meet with patients’ families. Sometimes patients refuse our services because they feel to do so means that they must be dying. When they do so, they may miss opportunities to receive valuable support.
An important aspect of what we do is to educate patients and families alike about how palliative care can help. We talk about the similarities and differences between hospice (end-of-life only) and palliative care (end-of-life and in conjunction with treatment).
Our team addresses physical, emotional and daily living concerns, as well as supports patients and families as they cope with medical issues. A serious illness can influence your physical and emotional wellbeing. Medical treatment may or may not cure your disease, and it can cause painful or uncomfortable side effects. Being in the hospital away from loved ones can be stressful and frightening.
Through symptom management, we help manage pain and other side effects of treatment and illness. Through counseling and listening, we help patients and loved ones consider care and treatment recommendations from their doctors and how that fits with their life goals.
2. You want to talk my loved one out of treatment.
Our work does not involve talking patients out of a particular course of treatment. It may involve raising questions about whether the treatment is likely to help in the way the patient hopes, and whether there might be other types of care that would be more beneficial.
Palliative care providers also help patients and loved ones translate confusing medical terminology into information they understand. This allows them to make informed decisions about their care. We recognize that facing serious illness can be stressful, and when people are stressed, it’s hard for them to absorb what they hear from doctors about their conditions. We sit with patients and loved ones, answer their questions and make sure everyone is on the same page.
Using language that patients and loved ones understand is important to our work. We do our best to avoid medical jargon, and we use reflective listening to ensure that patients and families have understood the information being presented. For example, we might ask, “What have you heard from the doctors?” Or, “What is your understanding of what’s just been said?”
In addition, we are inclined to use terms such as “death” and “dying,” rather than “transitioning” or “too sick to recover,” in an effort to make sure that patients and families are clear about the medical reality of an illness or condition.
3. You’re here to “withdraw care” because my doctor has given up on me.
We understand that it can be very hard for patients and loved ones to hear that their condition or illness is not curable and will continue to worsen despite medical intervention. These are some of the most frightening moments for a patient or family, and make them feel that the doctors have “given up.”
As palliative care clinicians, we are sensitive to these reactions. We tell patients and families that we never stop providing care, but when a cure is not possible, we may shift to a plan of care that is focused on making patients feel as good as possible for the remainder of their lives.
Growing our palliative care program
Our palliative care team was established in 2015, and has been growing steadily since. As of mid-2017, we consult with about 140 patients and families each month. We first partnered with the advanced heart failure program, where we saw patients who were at the beginning, middle or end of treatment. That collaboration has helped us construct a solid foundation for our expansion throughout the hospital.
We now work with cancer teams and hospitalists, and we’ve also branched into the intensive care units. These providers care for large volumes of patients, many of whom are seriously ill or injured. We help them collaborate with the family members to discuss and navigate care plans together.
As more providers learn about our services, the demand continues to grow. Despite this, we’re seeing fewer than five percent of the people who come into the hospital. That means there are many more people who could benefit from our services, and it strengthens our resolve to continue growing as a program. In addition, because our team will never be able to meet the need, an important part of our work involves educating other providers about how to integrate palliative care into their own practices. And as we grow, our mission remains constant: to help people with serious and chronic illnesses feel as good as possible for as long as possible.