Palliative care services improve quality of life for people living with serious medical conditions.
However, Palliative care may not be what you think.
The program is often misunderstood, with one recent study showing that some 89% of Americans state they have little or no knowledge about palliative care. Public awareness is a limiting factor when it comes to helping patients to access and utilize this important program and reap the many benefits it offers.
What is Palliative Care
Palliative care is specialized medical care that helps a patient to solve the problem of what comes next after the diagnosis of a serious medical condition. Rather than acting as a stand alone program or a substitute for other care programs, it works collaboratively and often as an overlay with the patient’s other care providers. These providers include their primary care physician, specialists, home health care and therapists.
This program bridges gaps for individuals who have been diagnosed with illnesses such as cancer, advanced lung disease, kidney failure, liver disease, ALS, COPD, Parkinson’s disease, and many other conditions.
It is provided at home and offers more extensive support than the approximate 30 days of home health or 100 days of rehab that Medicare covers. Individuals benefit from this safety net when they’re not yet certain of their prognosis, decisions about treatment, or future plans and goals.
Why Palliative Care is Not End of Life Care
Unlike with hospice care, it is not necessary for a physician to make a prognosis about life expectancy in order for a patient to receive palliative care. Rather, the program can support whatever treatment options a patient chooses to pursue. It also provides them with important information about potential next steps if the illness is life limiting or the individual chooses not to pursue curative treatments.
Palliative care is NOT end of life care. However, for some patients, it is a gateway to hospice care. For others, it is a program that improves quality of life while they undergo curative treatments. The care can help to make side effects of treatment easier to manage and the patient more comfortable.
Additionally, the palliative care team provides medical, social, emotional, and practical support to patients and their family members. The professional care team remains with the patient throughout the course of their illness. They provide essential support in navigating choices. Armed with information and support, patients are empowered to reduce feelings of fear and uncertainty. They can then better navigate the course of their illness, and reach their goals.
When is Palliative Care Appropriate
Palliative care focuses on improving quality of life. Therefore, it is often appropriate even early in the disease process. However, information about palliative care is not always immediately available to patients after diagnosis. Misconceptions about the program can prevent some patients from taking advantage of all that palliative care has to offer.
“Despite the known benefits of palliative care and its endorsement by the American Society of Clinical Oncology and the National Comprehensive Cancer Network, we have not seen an increased uptake of palliative care by those who need it most,” said Motolani Ogunsanya, PhD, an assistant professor at The University of Oklahoma Health Sciences Center. “A common misconception is that palliative care is only for end of life care when, in fact, it can begin at any point in the disease course.”
Medical professionals find that patients who are diagnosed with a serious medical condition benefit by understanding that palliative care both supports their treatment choices and better prepares them for any eventual transition to hospice care.
Patients who receive palliative care receive the gift of time and important information and support. They are better able to explore treatment options and understand the benefits of each level of care available to them. Armed with information, patients struggle less with conversations with their medical team. They remain more involved in the treatment and care process, see a reduction in unnecessary hospitalizations, and experience a sense of confidence and dignity regardless of whether their health improves or declines.
Transitioning to Hospice Care
One choice that some patients make is a transition from palliative care to hospice care. Transitioning to hospice, when appropriate, offers the highest level of support to patients.
Hospice shifts the focus away from seeking a cure while offering comfort care including pain and symptom management. This makes it easier for the patient to focus on spending time with loved ones and making final memories, advance care planning directives, and preparations. Providing a quality, peaceful end of life experience is the central goal of hospice care.
Palliative Care and Hospice Care Differences and Similarities
Palliative care and hospice care are two unique programs with some similarities. Patient and family autonomy, dignity, and comfort are paramount in both. The differences primarily focus on expected outcomes, the patient’s prognosis if treatment continues, and the patient’s goals.
Palliative care services are appropriate for anyone with a serious medical condition. This is true even for those who continue to undergo treatment.
Hospice care is for a person diagnosed with a terminal illness and life expectancy of six months or less if the disease follows its normal course. The person can remain on hospice care if they live longer than six months as long as their doctor continues to prescribe the service for their life limiting illness and the condition of the person continues to decline.
Both palliative care and hospice care, or comfort care, are available at home and focus on improving quality of life. Each offers care including physical, emotional, spiritual and medical support. Both help patients to manage pain and other distressing symptoms from the condition itself.
Palliative care pain and symptom management also helps patients to more easily manage side effects related to curative treatments. Hospice care includes additional emotional and spiritual support including bereavement support for the family after a loved one has passed.
Medicare, MediCal and private health insurance offer coverage for both hospice care and palliative care according to the health plan. Coverage limitations for private insurance plans can vary, and it’s important to consult with the insurance company to understand the specifics of coverage.
Palliative or Hospice Care Decisions and the Patient’s Goals
When making decisions about palliative care, some of the most important things to consider are the patient’s goals. But what if the patient hasn’t set goals yet? How should that process begin?
First, it’s important to consult with the patient’s health care team. A consult helps the family to understand the serious medical condition, treatment options, the prognosis, advance care planning needs and goals, and any related side effects of treatments.
Patients benefit when a trusted loved one joins them for the doctor’s visit. This person can take notes, repeat back information about the medical condition, and ask questions. It is important to have a clear understanding in order to move forward in the goal setting process. Take your time when speaking with your doctor.
Next, sit down and discuss what the doctor shared. There are important things to consider here including:
- The loved one’s prognosis
- Who will provide support and help the patient to manage care needs
- What treatment options are available
- What the doctor’s treatment recommendations are
- How choices will impact everyone’s quality of life
- What is the patient willing to give up with regard to quality of life in exchange for more time
It’s important to make this a safe space to discuss fears and concerns, as well as hopes and expectations. If the decision is to continue treatment, understand the expectations for treatment. Also consider if there are specific reasons why the patient might, at some point in the future, decide to discontinue treatments. It’s helpful to have information about both palliative care and hospice care available even if the family ultimately decides not to immediately pursue one or both of these options.
Remember also that these conversations and the goal setting process are fluid. It’s not wrong to make one decision today and then decide to change goals or plans at any point in the future.
Palliative care is an important resource for people living with a serious medical condition. Perhaps the greatest gifts granted by this program are time, support and information. Families benefit by understanding both this program and hospice care and making informed choices about how to move ahead.
If you have questions about palliative care, Salus is here to help. Our goal is always to meet you where you are today. We’ll help you find the right level of support, that which helps you to meet your goals. Offering a full line of in-home care services including both palliative care and hospice care is one way in which we do this.
Contact us anytime with your questions or to get information about how professional support can make it easier to meet your care needs.