Introduction

Almost 13 million people in the U.S. live with serious illnesses that cause pain and other symptoms. We understand that dealing with the symptoms of a serious illness, like pain, exhaustion and anxiety, can impact quality of life and make it hard to enjoy. It often creates difficult decisions and causes distress for the patient, their family and caregivers. Palliative care is a specialized branch of medicine that focuses on relieving pain from serious illness, such as cancer. Regardless of age or the progress of your disease, you can receive palliative care. The goal of this type of care is to improve quality of life for patients. A trained palliative care team provides a range of services and includes physicians, nurses, chaplains, social workers and other specialists. 

What Is Palliative Care?

Palliative care is a multidisciplinary approach to symptom management for people with serious medical conditions, including:

• Cancer
• Heart disease
• Lung disease
• Amyotrophic lateral sclerosis (ALS)
• Multiple sclerosis (MS)

This type of supportive care focuses on relieving the symptoms of illness, including pain. Palliative care can begin at any time, including the point of diagnosis, or it may not start until the illness has progressed. Palliative care can happen alongside treatment for the condition. 

Key Goals of Palliative Care

• Improve quality of life for patients and families.
• Manage pain and other distressing symptoms (physical, emotional and psychological).
• Facilitate communication among and between patients, their families and their health care providers.
• Coordinate services and help navigate the health care system for the patient.

Palliative Services Include:

• Pain and symptom management
• Managing symptoms such as pain, nausea, fatigue, or shortness of breath with medication and other methods
• Lessening distressing symptoms, including breathing difficulties; nausea and loss of appetite; bowel and bladder issues; other physical issues; confusion and anxiety
• Clarification of care goals
• Helping you and your loved ones understand your illness, know what to expect and understand your treatment options
• Advocating for the best possible quality of life for you during your illness and openly discussing treatment options
• Helping you and your family adjust your treatment if your illness worsens
• Assisting with care planning options and choices
• Emotional and spiritual support
• Providing emotional and spiritual support for you and your family
• Providing religious rituals when desired
• Connecting to helpful community resources
• Emotional and psychological support, which may address anxiety, depression and coping mechanisms
• Care coordination among all providers

Myths and Misconceptions

Myth: Palliative care is only for end-of-life patients.

Fact: Palliative care is available for anyone of any age and any disease state. 

Myth: Choosing palliative care means giving up hope.

Fact: Palliative care seeks to improve quality of life while you are being treated. It does not necessarily mean you are close to the end of life. Some patients recover and no longer need palliative care.

Myth: It’s only for cancer patients.

Fact: While cancer patients can benefit from a palliative care program, many conditions’ symptoms can be relieved, including those from ALS, MS, heart or lung disease, or other conditions.

Myth: It’s the same thing as hospice.

Fact: Palliative care is an umbrella term that covers pain and quality of life during the course of a disease. Hospice refers specifically to end-of-life care, when the patient has a terminal illness. 

How to Access Palliative Care

First, talk to your (or your loved one’s) primary care provider. They will refer you to the appropriate palliative care services. You can maintain a relationship with all your usual doctors and specialists, even if you are receiving palliative care services. 

Palliative care is usually given in a hospital, nursing home or other clinical setting. Your supportive care team may include:

• Physicians
• Nurses
• Social workers
• Chaplains
• Dietitians and nutritionists

The Role of Family and Caregivers

A chronic or serious illness impacts the patient as well as their family and friends. They see the patient’s struggles with the illness, including pain and other unpleasant symptoms. A caregiver may be called on to make difficult decisions with or for the patient. These people may be called “hidden patients,” because while they don’t experience the illness itself, they are part of the treatment, healing and decision-making process all the same. 

Family and friends are affected in many ways, including:

• Emotional distress as they witness a loved one in pain or declining health
• Caregiving burden that includes coordinating care, transportation and medication management
• Decision-making stress, which can be emotionally draining as they try to make the best choices for their loved one
• Social impacts of caregiving affecting a person’s daily life and obligations
• Need for support, such as emotional or physical help

How is Palliative Care Different From Hospice Care?

Both have similar goals: to ease pain and suffering. Hospice is usually recommended when a physician believes the patient has six months or less to live. The doctor may order “comfort care” for a patient already in the hospital or nursing home. That means treatment will no longer be pursued, and the ultimate goal is to relieve pain and suffering in the last months. Sometimes people do recover out of hospice.

Palliative care can be done at any point in the disease process. Pain and other symptoms may be tolerable at first, so the patient may choose not to use supportive care services. As time goes on, they may take advantage of services the health care provider can refer them to. Palliative care patients still undergo treatments for their illnesses.

Financial Responsibilities and Palliative Care

Most health care plans cover palliative care services. Call your insurance company to see what is covered by your specific plan.

What Can I Expect from Norton Palliative Care Program?

Your supportive care team will talk with you about your illness, pain and discomfort, living situation, and many other aspects of your life. A detailed and customized plan will be created based on your unique situation. The care team is with you every step of the way.