Families navigating serious illnesses often need to learn a new language, from medical terminology to patient advocacy to knowing the next right steps. Stressful timelines and countless options can prevent them from getting the help they need, including palliative care or hospice care. What do these terms mean and when is the right time to seek support?
Defining Palliative & Hospice Care
Similarities and shared goals of hospice and palliative care include comfort measures, pain control, symptom management, and increased quality of life. Both need a referral from a healthcare provider; you can request a referral if you feel it’s time. While there is overlap in the types of support offered, it’s also important to understand the differences between palliative and hospice care.
Palliative care is for any individual with a serious illness, regardless of life expectancy or prognosis. This care can begin at diagnosis, is helpful during any stage of illness, and continue alongside curative disease treatments. Medical, emotional, social, and practical support is provided.
An example of palliative care may be a palliative care specialist recommending iron infusions or blood transfusions for a cancer patient who’s anemic, while also continuing chemotherapy.
Hospice care is for any individual with an end-stage illness and a life expectancy of six months or less, should the disease run its normal course. This type of care begins after curative treatment of the disease is stopped, or at the time of the terminal diagnosis, if there will be no curative treatment. Medical, emotional, and spiritual support is offered. Hospice patients can re-qualify if they live longer than six months; some may improve and go off hospice but still receive palliative care.
An example of hospice care may be treating pain symptoms of the cancer or the symptoms of the cancer treatment, but not the chemotherapy intended to extend the life of a cancer patient.
Patients who benefit from palliative or hospice care may suffer from heart failure, chronic obstructive pulmonary disease and other lung diseases, cancer, dementia, Parkinson’s disease, or other serious diseases and illnesses. Hospice patients are in the end-stage of these diseases without the expectation of recovery. If a patient is on palliative care and their condition is changing, read Is it Time for Hospice? and consider calling hospice for a free inquiry.
Care Teams & Support
Three main components of palliative and hospice care include:
- Meticulous prevention and management of symptoms, including pain
- Effectiveness and quality in communication, in discussion of goals of care and advance care planning
- An extra layer of support for practical needs, particularly with regard to care provided at the place the patient calls home
Palliative care: Most palliative services are provided by a palliative care physician, nurse practitioner, or nurse with consultative support from a social worker and chaplaincy services. Disease treatment still falls under a specialist or primary care doctor. Palliative care specialists can help patients navigate treatment options. Visits by palliative care providers are on an as-needed basis. The care setting is typically in a hospital or extended-care facility, but can also be in the home.
Hospice care: In addition to a family member or in-home caregiver who’s extensively trained and equipped by hospice providers, end-of-life care is overseen by a hospice care team comprised of a medical director, personal physician, nurse, aide, social worker, spiritual care coordinator, bereavement coordinator, and volunteers. Specialty therapists and dietitians, as needed, also visit.
The Hospice Plan of Care typically includes one to two nursing visits per week. Home health aide visits are commonly three a week, but can be more frequent based on a patient’s need, plus visits from the other disciplines as needed by the patient/family. With hospice, 24-hour on-call services are also available. Care includes pain and symptom management, assistance with activities of daily living like bathing, a comforting presence, and relief for caregivers. Visits typically increase as a patient declines. See the different levels of care here.
Differences Between Palliative & Hospice Care
Both hospice and palliative care improve patient outcomes and quality of life. Patients receive comfort care, plus they and their caregivers feel supported with healthcare decisions, grief, and resources such as advance care planning. See below for a quick reference chart from the NIH National Institute on Aging.
|What is the focus?
|Palliative care is not hospice care: it does not replace the patient’s primary treatment; palliative care works together with the primary treatment being received. It focuses on the pain, symptoms and stress of serious illness most often as an adjunct to curative care modalities.
It is not time limited, allowing individuals who are ‘upstream’ of a 6-month or less terminal prognosis to receive services aligned with palliative care principles. Additionally, individuals who qualify for hospice service, and who are not emotionally ready to elect hospice care could benefit from these services
|Hospice care focuses on the pain, symptoms, and stress of serious illness during the terminal phase. The terminal phase is defined by Medicare as an individual with a life expectancy of 6-months or less if the disease runs its natural course.
This care is provided by an interdisciplinary team who provides care encompassing the individual patient and their family’s holistic needs.
|Who can receive this type of care?
|Any individual with a serious illness, regardless of life expectancy or prognosis.
|Any individual with a serious illness measured in months not years.
Hospice enrollment requires the individual has a terminal prognosis.
|Can my patient continue to receive curative treatments?
|Yes, individuals receiving palliative care are often still pursuing curative treatment modalities.
Palliative care is not limited to the hospice benefit. However, there may be limitations based on their insurance provider.
|The goal of hospice is to provide comfort through pain and symptom management, psychosocial and spiritual support because curative treatment modalities are no longer beneficial.
Hospice should be considered at the point when the burden of any given curative treatment modalities outweighs the benefit coupled with prognosis. Other factors to consider and discuss, based on individual patient situations, are treatment modalities that no longer provide benefit due to a loss of efficacy.
|What services are provided?
|Pain and symptom management, in-person and telephonic visits, help navigating treatment options, advance care planning and referrals to community resources.
|Pain and symptom management, 24-hour on-call service, in-person visits, medical equipment, related medications, inpatient care, continuous care in the home, respite care, volunteer services, spiritual care, bereavement and counseling services.
There are four levels of care that can be provided to patients per CMS regulations (routine, inpatient, continuous, and respite care).
|Where are services provided?
|Palliative care may be provided in any care setting.
|Hospice care can be provided in most care settings.
|Who provides these services?
|Palliative care may be provided by an interdisciplinary team. However, most palliative services are provided by a physician, nurse practitioner or nurse with consultative support from social worker and chaplaincy services.
These services are performed in collaboration with the primary care physician and specialists through consultative services or co-management of the patient’s disease process.
|Hospice care is provided by an interdisciplinary team that is led by a physician and includes nurses, social workers, chaplains, volunteers, hospice aides, therapy disciplines and others.
These services are performed in collaboration with the attending physician.
|What types of health care organizations may provide these services?
|Palliative care is not dependent on care setting or type
of medical practice. Services are performed in collaboration with the patient’s primary care physician, other specialists, and health care settings they may be receiving services from.
|How long can an individual receive services?
|Palliative care is not time-limited. How long an individual can receive care will depend upon their care needs, and the coverage they have through Medicare, Medicaid, or private insurance.
Most individuals receive palliative care on an intermittent basis that increased over time as their disease progresses.
|As long as the individual patient meets Medicare, Medicaid, or their private insurer’s criteria for hospice care. Again, this is measured in months, not years.
|Does Medicare pay?
|Palliative care is covered through Medicare Part B. Some treatments and medications may not be covered.
May be subject to a co-pay according to the plan.
|The Medicare Hospice Benefit pays all related costs associated with the care that is related to the terminal prognosis as directed by CMS.
There may be some medications, services, and/or equipment that are not included in the Medicare Hospice Benefit.
|Does Medicaid pay?
|Palliative care is covered through Medicaid. Some treatments and medications may not be covered. May be subject to a co-pay according to the plan.
|In most states Medicaid pays all related costs associated with the care related to the terminal prognosis as directed by CMS.
There may be some medications, services and/or equipment that are not included in the Medicaid Hospice Benefit.
|Does private insurance pay?
|Most private insurers include palliative care as a covered service. Each payer is different, and their palliative services will be outlined through the insurer’s member benefits. Some treatments and medications may not be covered. May be subject to a co-pay according to the plan.
|Most private insurers have a hospice benefit that pays all related costs associated with the care related to the terminal prognosis.
There may be some medications, services and/or equipment that are not included in the individual’s policy.
May be subject to a co-pay according to the plan
|When should I refer?
|Patients with advanced chronic illness that have received maximum medical therapy and are at risk of using the hospital for decompensation
|If you would not be surprised if this patient died within the next 12 months, they are likely appropriate for hospice. Patients that have received maximum therapy and focus has shifted to symptom management and comfort care.