Palliative Care:
Essential Information for Patients and Families

By Lillie Shockney, RN., BS., MAS, HON-ONN-CG

Palliative care can be a very valuable tool in an advanced cancer patient’s life. But palliative care is often misunderstood and even feared by patients, their caregivers, and their loved ones. Here is what you need to know when considering palliative care if you or a loved one has a serious illness, such as advanced-stage cancer.

Palliative care explained

Sometimes called “supportive care,” palliative care does not replace a patient’s primary treatment. Palliative care is specialized medical care that focuses on the management of symptoms or side effects that are disruptive to a patient’s quality of life. It is designed for those who have a serious, life-threatening, or terminal illness. Palliative care can be thought of as quality-of-life preservation or quality-of-life restoration.

Palliative care often involves managing and treating a patient’s pain in ways other than prescribing opioids (medications prescribed by doctors to treat persistent or severe pain). For example, palliative care specialists may treat a patient’s pain through administering nerve blocks (injections that block pain from specific nerves) or even through targeted radiation therapy, especially if the pain is in the spine or other bones. Palliative care specialists are also skilled in helping patients who may feel ill to be able to eat by using drugs to stimulate the appetite, rather than only treating the nausea they may be experiencing. There are many other ways palliative care specialists can help make a patient feel more comfortable, decrease their pain, manage their side effects, and increase their quality of life.

Palliative care professionals are also trained and comfortable with having difficult conversations with patients and family members, such as about their prognosis, what to expect going forward, and even how to talk with their children or other family members about their illness and what they should expect.

Palliative care is different from hospice care

Though the two often work hand-in-hand, palliative care and hospice care are separate and distinct. In hospice care, the focus is on preserving quality of life near or at the end of life. Palliative care, on the other hand, can and should be integrated into a patient’s treatment plan from the point of their initial diagnosis, when they are not yet near the end of their life, in order to improve their quality of life.

Receiving palliative care does not necessarily mean that the end of life is near, or even that a diagnosis is terminal. Patients with a serious diagnosis may receive palliative care at any point during their illness.

The chart below from the National Institutes of Health outlines the differences and similarities between palliative care and hospice care:

Who should receive palliative care?

Palliative care is a resource available to anyone diagnosed with a serious illness whose symptoms of the disease or the side effects of its treatment will negatively impact their quality of life.

Palliative care is not only reserved for cancer patients or those with a terminal diagnosis. Anyone diagnosed with a serious, life-altering illness, at any age, can benefit from palliative care, including but not limited to those with cancer, degenerative or advanced diseases, and even advanced age.

Palliative care is most helpful when provided early

Palliative care can be helpful at any stage of a patient’s illness and is best implemented soon after diagnosis. A palliative care specialist should be consulted early in the patient’s diagnosis if or when a treating physician is not able to get the symptoms of the patient’s disease or the side effects of treatment controlled and diminished.

It is advised to consult with a palliative care specialist even before symptoms or side effects begin affecting the quality of a patient’s life in order to discuss future expectations and options, and when to begin implementing palliative care measures.

How to request palliative care

The treating physician should refer a patient to a palliative care specialist upon diagnosis of a serious or life-altering illness. However, if the physician does not provide a referral upfront, the patient or their caregiver should ask for a referral to a palliative care specialist or team.

If the patient’s medical facility doesn’t offer palliative care specialists, or they don’t have referrals for specialists, ask the facility’s nurse or patient navigator, or hospital social worker, if there are palliative care specialists within the patient’s local community that they can be referred to.

Sometimes physicians or oncologists will claim to be able to control and relieve a patient’s symptoms and side effects without consulting a specialized palliative care team. However, it is always advised that a patient seeking palliative care receive their care from the specialists themselves, rather than through their regular physician or oncologist.

Palliative care for metastatic breast cancer

A person diagnosed with Stage 4 metastatic breast cancer (MBC) is a prime candidate to receive palliative care immediately after receiving their diagnosis. An MBC patient should advocate for themselves by asking for palliative care referrals during their initial consultation with their medical oncologist. Sometimes a medical oncology office will already include palliative care specialists as part of their multidisciplinary team. Other times, if palliative care staff is not integrated into the oncology office, the patient may need to be referred to specialists within the community for care.

Those diagnosed with MBC face a unique and profound set of physical and emotional challenges. As a breast cancer specialist and survivor myself, I encourage women with MBC to remember that, at a certain point, quality of life may become more important than quantity of life. Palliative care can help a patient with MBC feel good enough to experience the joys life still has to offer, despite a terminal diagnosis.

Palliative care doesn’t need to be entered into with fear, uncertainty, or misinformation. It can be a valuable resource in a patient’s treatment plan, relieving them of their symptoms and side effects, preserving or restoring their quality of life, and empowering them to be in control of their own diagnosis and treatment journey.

National Breast Cancer Foundation is here for you and your loved ones. Whether you need support, education, or help during treatment, we have a team dedicated to getting you the help you deserve.

Sources:
National Institutes of Health
National Hospice and Palliative Care Organization