What Is Palliative Care and How Do We Get It?
Palliative means “to ease” and it’s available now.
By Joan Panke, Palliative Care Coordinator at George Washington University Hospital in Washington, D.C.
When someone is diagnosed with a serious illness, it can be overwhelming for a caregiver as well as the patient. If the focus is on cure and recovery, there are tests, procedures, and treatments to get through. When the disease is life threatening, questions about dying inevitably come up, which means emotional and spiritual concerns are already weighing on the patient and caregiver. Meanwhile, physical symptoms may be causing a loved one distress.
Caregivers start to wonder how they can help their loved one through the days, weeks, months, or years to come. What many don’t realize is that palliative care is available to help patients and caregivers with all these physical, logistical, and emotional concerns. And it is available right away.
More Than End-of-Life Care
Unfortunately, a lot of people who could benefit from palliative care earlier don’t use it, often because they associate “palliative care” with “end of life.” Although palliative care is a key component of helping patients during the dying process, it is not just for the dying. In fact, palliative care can be accessed anytime in the course of an illness to assist with the following needs.
- Understanding and managing pain, symptoms, and other physical limitations of a disease.
- Coping with practical issues, such as transportation, altered work and child care scheduling, and changing roles in the family.
- Financial and healthcare decisions, including completion of important forms.
- Support for emotional burdens.
The Difference between Hospice and Palliative Care
While hospice and palliative care are alike in many ways, there are important differences. To help people understand the differences, I find that it’s helpful to first explain how these two specialties came about.
The Roots of Hospice
Hospice began in the 1970s as a way to improve how people die. Recognizing that dying is a natural part of life, hospice pioneers wanted to improve care by focusing on the quality of remaining life. The emphasis was (and still is) on relieving distressing symptoms and other physical needs, while also addressing emotional, social/practical, and spiritual concerns. Traditionally, access to hospice care has been limited to those patients who are expected to die within six months.
How Palliative Care Began
To palliate means “to ease.” Palliative care came about through the recognition that the goals of hospice–focusing on distressing symptoms, along with the emotional, social, and spiritual concerns–were services that should be available to patients and caregivers at earlier stages of illness. Within a decade of the founding of the first U.S. hospice, palliative care began to be recognized as a medical specialty.
How Hospice and Palliative Care Are Alike
Because they come from the same roots, the two specialties share similar goals and focus. The main priority is improving the quality of life for both the patient facing serious illness and the patient’s family members–whoever they define as “family.”
Both specialties also offer care that is provided by a team of specialists, including physicians, nurses, social workers, nutritionists, spiritual caregivers, nursing aides, and volunteers. And both teams work closely with the patient and family members to help with the following.
- The recognition and aggressive management of physical symptoms (e.g., pain, nausea, decreased appetite).
- Daily care needs and concerns.
- Coping with the emotional stresses associated with a serious illness, including depression, anxiety, and grief.
- Adjusting to changing family roles and relationships.
- Managing financial and medical issues.
- Expressing spiritual and religious values and integrating these values into the care of both the patient and the patient’s loved ones.
How They Differ
The main difference between palliative care and hospice care is when a patient can access these services. Anyone with a serious illness, regardless of life expectancy, can receive palliative care. This means people can get help from palliative care services much earlier than from hospice. Palliative care can be used even when a person is getting curative treatment. Hospice care is usually for patients who are no longer undergoing curative treatment. Another way to think of the difference is to remember that all hospice care is palliative (they both have the same goals—to improve the quality of life and make patients comfortable), but not all palliative care is hospice.
Palliative Care
- Patients who have a serious, potentially life-threatening illness may seek palliative care at the same time that they see other healthcare providers. In other words, you may receive palliative care while you are still undergoing treatments aimed at curing an illness.
- Most insurance covers palliative care along with other care being provided for the illness.
Hospice
- Most often no further curative treatments are given.
- For someone to be eligible for insurance coverage of hospice, the primary physician must certify to the best of his or her ability that the person has a “prognosis,” or life expectancy, of approximately six months or less. (However, someone can outlive the six-month prognosis and remain covered for hospice care. See further articles about hospice.)
Note: Be sure to check your insurance coverage to find out the specifics of palliative care and hospice coverage.
Where Palliative Care Is Provided
Like hospice, palliative care is a kind of care rather than an actual place. Care can be provided in the hospital, in outpatient clinics, and wherever the person lives. Availability of services varies widely depending on what part of the country you live in, and whether you live in a rural or urban setting. The following are typical scenarios for palliative care.
In the Hospital
Currently, 30% of hospitals in the United States offer palliative care services. These services also vary widely. Some hospitals offer a “consult service,” which means a team of palliative care specialists works closely with you and your primary doctor to help with your care. Some hospitals also have a dedicated palliative care unit, where patients receive care from the team of palliative care specialists while in the hospital. The palliative care team may be the primary team, or may work closely with other specialties to address care needs.
Once a patient is discharged from the hospital, there may be outpatient palliative care services available for ongoing care. Ask your healthcare providers about which types of hospital and outpatient palliative care services are available in your area.
In the Home
More and more, palliative services are becoming available in the home. Whether the home palliative care team is affiliated with a hospice organization or is an independent agency, the delivery of care works the same way as a home hospice team or homecare agency would work. Team members visit a patient at home from time to time and assess how things are going. One important benefit is that they are often able to help relieve distressing symptoms at home. This way, patients can avoid uncomfortable and lengthy emergency room or hospital visits. Ask your primary physician or palliative care providers if there are home services available in your community. If so, they can help you determine eligibility and insurance coverage.
In the Nursing Home or Assisted Living Facility
In nursing homes and assisted living facilities, palliative care services can give patients and families options they did not know existed. Rather than going back and forth to a hospital, these “home” visits can improve quality of life by aggressively treating patients where they live.
Keep in mind that available services differ depending on where you live. Find out about services in your area by asking your healthcare providers, area hospices, and other resources (e.g., friends, social and religious organizations).
Overcoming Barriers to Getting Care
The biggest barrier we face is that people–families, patients, and even healthcare providers–do not understand that palliative care can be accessed anytime during the course of an illness. If it’s requested, very often you will be told “not yet.” In fact, most healthcare providers also think that palliative care and hospice are identical.
Whenever you hear a “not yet” comment, think of it as an opportunity to clear up any misunderstanding of what palliative care programs can provide. Remember, even those who have a serious illness, go through treatments, and are cured of that illness can receive palliative care.
Information Is Power
Be persistent in helping providers understand the benefits of palliative care and letting them know when you think your loved one needs these services. Start with good, reliable information, including what palliative care can offer. Here are some tips for getting started.
- Ask local hospice programs about palliative care programs. Try a Web search. (National Hospice and Palliative Care Organization has a helpful Web site: http://www.nhpco.org/ – look for “find a provider,” but note that only member organizations are listed.) Ask friends, caregiver support group members, and other healthcare providers.
- Gather a list of what kinds of palliative services are available in your area. For example: Is there a consult service in the local hospital? Are there outpatient palliative care programs? Are there home palliative care services?
- Find out what they offer. Different palliative care programs vary in kinds and timing of services throughout the illness.
Consider a Self-Referral
Gathering this information will help you convince healthcare providers and others that it is never too early to access palliative care. But if you and your loved one are still hitting barriers, remember that many palliative care services will accept self-referrals as well. If you are not able to get a referral from your provider, consider calling area hospice and palliative care programs for information on what services they are able to offer.
Overcoming Lack of Services
Unfortunately, another barrier may be the lack of adequate services in a particular area. Patients and family members can be powerful advocates to get needed services in their community. Let your healthcare team and your local hospital know that you would like to have a palliative care program in your community.
Resources
The Center to Advance Palliative Care offers an excellent Web site with information on resources, palliative care stories, and tips on how to get palliative care. http://www.getpalliativecare.org/
City of Hope Pain & Palliative Care Resource Center Web site provides one of the most comprehensive sources of palliative care resources, as well as quality of life topics, pain assessment tools, and other listings helpful to caregivers and patients. http://www.cityofhope.org/prc/
The National Hospice and Palliative Care Organization offers a concise and accessible PDF brochure called “What Is Palliative Care?” http://www.caringinfo.org/files/public/What_is_Palliative_Care_Brochure.pdf
| Expert Author Bio |
 Joan Panke, APRN, BC-PCM, is the Palliative Care Coordinator at George Washington University Hospital in Washington, DC. As a palliative care nurse practitioner, Panke has extensive expertise in helping patients and families manage the physical, psychological, social, and spiritual aspects of facing a life-threatening illness. She is a curriculum consultant and national faculty member for the End-of-Life Nursing Education Consortium (ELNEC) Project (see www.aacn.nche.edu/ELNEC) and is president of the Greater Washington Partnership for Palliative and End-of-Life Care (see: http://gwpartnership.org/). |
