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Palliative Care – What It Is, What It Isn’t

Palliative care is a form of specialty medical care that is widely available and widely misunderstood. The service works as an interdisciplinary team to clarify and meet the needs of individuals with serious illness by relieving symptoms, reducing the burdens of illness, increasing comfort, and improving quality of life.

The palliative care team begins with a lot of listening to the patient and the patient’s family, to understand their unmet needs. The team may recommend medications and other interventions to control or prevent pain, shortness of breath, nausea, or other symptoms that take a toll on quality of life. They help patients and families understand the illness and cope with the stress, sadness, anxiety, or insomnia that come along with it. They may offer spiritual support or family counseling.

Palliative care teams don’t replace the medical team that is treating the patient’s illness—they work with them to provide an extra layer of support. Palliative care can be provided in hospitals, nursing homes, or assisted living facilities; it can also be provided at home to help keep people in their home and out of the hospital.

The most common misunderstanding of palliative care is the belief that it’s identical with hospice care. In fact, people can receive palliative care even while they are actively receiving treatment for their illness. (Hospice is the subset of palliative care that’s dedicated to keeping people comfortable at the end of life.)

Many people coping with serious illness describe what they want – management of symptoms – without knowing that they’re asking for palliative care.

Despite being available since the 70’s, palliative care is still relatively obscure in some parts of the country. Palliative care providers have to combat common misconceptions and provide information about what palliative services offer. At Vital Decisions, our clinicians come alongside individuals facing changes in their health. They also help people understand services that may be available to them as they are seeking treatment; services such as palliative care.

How to Talk about Palliative Care

Dr. Puri is the Medical Director for Palliative Care at the Keck Medical Center of the University of Southern California and the author of the powerful book That Good Night: Life and Medicine in the Eleventh Hour. She recently spoke with our team of Advance Care Planning Clinicians, and described how she overcomes the barriers she faces when informing people about and connecting people to palliative care services.

In her book, That Good Night, Dr. Puri  describes how palliative care can be best delivered with the person who is ill very much at the center of their care experience. Dr. Puri talks about the importance of language when discussing illness and what someone wants in terms of their medical care. At Vital Decisions, we call this equipoise.

What is ‘equipoise’? In medicine, the term refers to the importance of remaining neutral when discussing choices a patient may face where there is no “right” answer—only the option that’s the best fit for an individual in light of their own values, goals, and preferences. In a conversation about  Advance Care Planning, and specifically about the option of receiving palliative care, equipoise means that the clinician’s job is to offer education and, if requested, expert opinion, while helping the patient to understand and consider the information and then make a decision about what is right for them.

A unique challenge of discussing palliative care is that, if someone is familiar with the term, there’s a high likelihood that they’ll associate it with hospice and find the topic jarring. If the clinician simply delivers information, the intention of the conversation can often be misconstrued as implying that the patient is close to death—a most unwelcome implication.

According to Dr. Puri, going into difficult conversations is made easier by having a team—especially a social worker who can help to bridge the gap between doctor and patient. Through intensive training, our clinicians (whom all have masters level, behavioral health backgrounds) learn how to present information about palliative care (and other treatments) through the use of everyday language, sensitivity, skilled listening, and an attitude of equipoise. By using these skills, we help those we serve to better understand what palliative care is and isn’t and whether it might be a service that could be helpful to individuals now or in the future. We also have written materials about palliative care that are available for those we serve as well.

Below is an example of a common conversation our experts may have regarding palliative care:

 

*Clinician may go into more detail or offer more information based on the client’s questions or prior knowledge about an individual’s circumstances or needs.