Hospice & Palliative Care: Know Your Options
If you’re caring for an aging relative or coping with a serious illness, a healthcare provider might one day ask you to consider palliative care or hospice services. This can be confusing as many patients and families aren’t aware that there are palliative care options that aren’t hospice. It also can be scary to hear these words, as they often are associated with end-of-life care. However, connecting with the right services at the right time is key for patient quality of life and caregiver support.
Having palliative care or hospice as a part of your or your loved one’s care requires a physician’s prescription, so if you think you qualify for either service speak with your provider. This could be your primary care physician or a specialist such as an oncologist, cardiologist, or pulmonologist. Being an educated consumer of different healthcare services is an important step in navigating these important conversations with your provider.
What is Palliative Care?
Palliative care is specialized medical care for people with serious illnesses and is not an indicator that a patient has an imminently terminal condition. Indeed, some patients who receive palliative services may go on to live for many years while receiving treatment or even ultimately be cured of their serious illness. Palliative care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness -whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, social workers, and other specialists who work with a patient's medical team to provide an extra layer of support.
Most importantly: palliative care is appropriate at any age and at any stage in a serious illness and can be provided together with curative treatment. It typically is added as part of the regular medical care regimen a patient is already receiving. Patients receiving palliative care will still go to the emergency room if they become acutely ill, receive surgeries if needed, undergo chemotherapy and radiation, and participate in a host of other cure-directed treatments.
In other words, patients do not “give up” any active, cure-directed medical therapy in order to receive palliative care services. Instead, the palliative care team becomes part of the larger medical team providing therapies. This team typically assists in managing symptoms such as pain, nausea, sleep disturbances, depression, anxiety, and many other discomforts that accompany serious illness.
Many palliative care teams are based in hospitals and typically are added services when patients are hospitalized. However, some health systems also have palliative teams that can see patients in outpatient clinics or even visit them at home. Most major insurers will cover some portion of the cost of palliative care services provided across these settings. If you think adding these services to your or your loved one’s care might be helpful, ask your doctor whether a referral is right for you.
What is Hospice?
Many people think of hospice as a place for end-of-life care. However, for most patients hospice is not a physical place but is a philosophy of care. Unlike palliative care, which is added to ongoing medical therapies, electing hospice is a shift from usual medical care to a complete focus on comfort-directed care. For instance, when hospice is elected a patient no longer needs to go to the emergency room for acute illness but instead contacts the hospice team for assistance when illness worsens.
Hospice care is appropriate for those diagnosed with a terminal illness and a life expectancy of about 6 months or less. However, hospice is a renewable benefit, so if a patient lives beyond 6 months but still has the serious illness that qualified them for services, they can continue to receive hospice care. A physician must certify that a patient qualifies in order for services to continue.
Here is an important point to remember: electing hospice does not cause a person’s death. Instead, when a physician recommends hospice it typically means that they believe cure-directed therapies are no longer helpful in a patient’s care. Indeed, sometimes continuing with the usual medical care can be harmful when a person is weakened by disease and cannot tolerate invasive treatments such as surgery or chemotherapy. Having hospice care does not mean doing nothing; instead, electing hospice means choosing active therapies that are directed toward making a patient more comfortable. Some patients actually live longer once the focus of their care is on their quality of life.
The goal of hospice is to assist patients in maintaining the best quality of life possible for as long as possible. This means that patients who are still able to be active are encouraged to do as much as they can and to make the most of their time. Hospice care involves a team-oriented approach to symptom management and emotional and spiritual support tailored to a patient's needs and wishes near the end of life. Emotional and practical support are provided to the patient's loved ones as well. Because hospice teams are experts in managing terminal illness, they typically offer a range of suggestions about the best medications, diet, and physical and emotional care strategies to maximize comfort.
Hospice care is most typically provided in patients’ homes, whether that be their private residence or a nursing home. If family members are available to assist with a patient’s care, the hospice team will visit the patient’s home to assist with managing symptoms and to provide education and support to family caregivers. Some areas also have hospice inpatient units for acute symptom management, which often are connected with hospitals or agencies that also provide home hospice services. Residential hospice settings (often thought of as “hospice houses”) are available in some areas and may be connected with long-term care rather than acute needs for symptom management.
For those with Medicare or Medicaid, hospice is a benefit that typically is 100% covered. (Inpatient and residential hospice settings can be an exception to this, so always check with your provider and your insurer first.) Many other major insurers also provide some coverage for hospice care. If you think adding these services to your or your loved one’s care might be helpful, ask your doctor whether a referral is right for you.
Know Your Options
I hope these summaries of palliative care and hospice services have helped to clarify your understanding of the similarities and differences between the services. One way to summarize this topic is to say: all hospice is palliative care but not all palliative care is hospice. In other words, palliative care is the larger umbrella of medical care under which hospice is found. If you elect hospice, you are electing one form of palliative care, but if you elect palliative care you are not always electing hospice.
One of the challenges of discussing this topic is managing our own emotions around the subject of serious illness and end-of-life care. It’s very easy to get triggered when someone says the “p-word” or the “h-word.” This is understandable, and everyone is entitled to their emotions. However, knowing the goals and benefits of these services might be helpful in keeping your thinking brain engaged when the subject comes up with your family or your physician.
Being an educated consumer can also empower you to engage with your provider or your loved ones if you think these services might benefit you. Remember: your quality of life belongs to you, and you are allowed to ask for extra help if you are struggling.
If you are facing the physical, mental, emotional, and spiritual challenges of serious illness and want to talk more about how to access services or how to talk with you family or your healthcare provider, I’m here to help. You don’t have to do this alone.
