Comprehensive Guide To Palliative Care

The aging process can be difficult and complex. In addition to the usual symptoms associated with getting older, many seniors suffer from serious medical conditions which, if left untreated, may greatly reduce their quality of life.

If your family member or friend is suffering from a life-limiting illness or other serious medical condition, palliative care may be able to help alleviate their suffering and make them more comfortable during life-prolonging treatment, as they age, or at the end of their life. Read on to gain a better understanding of the important implications of palliative care.

What Is Palliative Care?

Palliative (pronounced pal-ee-ah-tiv) care seeks to treat the symptoms of a serious and/or terminal illness and focuses on helping the patient feel better as opposed to curing the underlying illness. Palliative care may be used to treat the symptoms of an incurable disease or condition or it may be used in conjunction with curative care. In some cases, palliative care may also be used to treat the side-effects of a curative treatment such as chemotherapy.

Palliative care is an important resource for anyone suffering from a debilitating illness. It is also a key component of hospice and palliative care. This article will help guide you through the process of determining whether or not your family member requires palliative care and how to go about accessing and paying for it.

What Is The Difference Between Palliative Care And Hospice Care?

Many people assume that hospice and palliative care are the same and that palliative care is only used for hospice patient care or people with incurable, terminal illnesses.

While the goals of hospice care and palliative care are the same—to make the patient as comfortable as possible and to provide medical, emotional, and/or spiritual support to the patient and their family—they are different types of care.

Palliative care is always a component of hospice care, but not everyone receiving palliative care is a hospice patient. Hospice is a specific type of care designed for those whose life expectancy is 6 months or less.

As previously discussed, palliative care may be used in conjunction with curative treatment, when such a treatment exists. Since hospice care is only administered to those who are approaching the end of their lives, curative treatment and hospice care are never administered concurrently. While palliative care is always an important component of hospice care, palliative care may also be used in a variety of other situations.

To learn more about hospice care and how it may help your family member as they approach the end of their life, please see the information provided here.

Who Needs Palliative Care?

As discussed above, palliative care is used to help ease the symptoms of serious illnesses and medical conditions. It is also an important part of hospice care, helping to ensure patients are as comfortable as possible as they approach the end of their lives.

According to the National Institutes of Health (NIH), palliative care may be offered to people suffering from a variety of serious illnesses including but not limited to:

Since palliative care is designed to address the symptoms of a life-threatening illness, it is also important to consider your family member’s specific symptoms and how they are impacting their quality of life. According to the NIH, palliative care may often provide relief from the following symptoms:

  • Pain
  • Nausea and vomiting
  • Loss of appetite
  • Fatigue
  • Shortness of breath
  • Sleep problems

If your family member suffers from these or other debilitating symptoms, palliative care may be a good option.

Whether or not your family member is also receiving curative treatment, palliative care may be able to help make them more comfortable and improve their quality of life. Providers will generally work with you and your family member to develop a customized care plan specifically tailored to your family member’s medical, emotional, and spiritual needs as well as the needs of your family.

What Services Does Palliative Care Provide?

Because palliative care is a broad term used to describe any and all medical care intended to help control and relieve the symptoms and stresses of a terminal illness or other serious medical condition, services differ greatly from patient to patient. Which palliative care services are required for your family member will depend on a variety of factors including:

  • Your family member’s living situation (whether they live at home, alone, with family, in a long-term care facility, or in a hospital)
  • Your family member’s specific symptoms and diagnoses
  • Whether or not your family member is currently receiving hospice care
  • Your family member’s personal preferences

As noted earlier, palliative care seeks to improve patients’ quality of life through a combination of symptom management and emotional and spiritual support. Your family member’s palliative care team will work with you to develop a customized care plan specifically designed to meet their unique care needs. Palliative care usually involves some combination of the following services:

  • Pain and symptom management
  • Management of symptom-related (non-curative) palliative medicine and treatments
  • Speech, physical, and/or occupational therapy
  • Emotional, psychological, and spiritual support and counseling for the patient and their family
  • Coaching for family members and other caregivers on patient care

Who Provides Palliative Care?

More than 65% of U.S. hospitals now have inpatient palliative care programs Outpatient and community-based palliative care programs are also becoming more prevalent as awareness about the benefits of palliative care increases among patients, families, insurers, and care providers. There are a variety of palliative care options available to you and your family member.

The types of healthcare professionals who may provide palliative care to your family member will depend on a variety of factors including their living situation, if they are currently receiving hospice care, if they are also receiving curative care, the specific symptoms being treated, and their personal preferences. Depending on these and other factors, palliative care is typically provided by a combination of the following people:

  • Physicians
  • Nurses
  • Home health aides
  • Staff members at a nursing home or other long-term care facility
  • Social workers
  • Psychologists
  • Chaplains
  • Dieticians and nutritionists
  • Speech, physical, and/or occupational therapists
  • Massage therapists
  • Family members and/or other caregivers

Where Is Palliative Care Delivered?

Palliative care may be administered in a variety of settings, depending on your family member’s current living situation and their specific needs and preferences. Depending on these and other factors discussed earlier, your family member may receive palliative care in their home, in a nursing home or other type of residential long-term care facility, or in a hospital.

In-Home Palliative Care

Depending on your family member’s ability to live independently and perform activities of daily living (ADLs) which include eating, dressing, bathing, and toileting, they may be able to receive palliative care in their home. In such cases, a family member, spouse, or other caregiver will likely play an important role in their palliative care. In addition, physicians, nurses, therapists, counselors, and/or home health aides will also make regular visits to your family member’s home to provide medical, emotional, and spiritual care.

Depending on your family member’s medical situation and whether or not they are currently receiving hospice care, they may receive in-home or outpatient curative treatment in conjunction with in-home palliative care.

Outpatient Palliative Care

If your family member is able to continue living in their home or is living in a non-medical long-term care facility such as an independent or assisted living community, outpatient palliative care may be a good option.

Unlike in-home palliative care, outpatient palliative care will require your family member to make regular visits to hospitals, medical centers, therapists’ offices, and/or clinics to receive care. As with other forms of palliative care, if your family member’s condition is curable, outpatient palliative care may be administered in conjunction with curative treatments such as chemotherapy for cancer patients.

Palliative Care In Long-Term Care Facilities

If your family member is a resident in a nursing home, assisted living community, or another long-term care facility, they may be able to receive palliative care as part of their customized care plan. Many nursing homes and skilled nursing facilities provide palliative care that is administered by medically-trained staff and many non-medical long-term care facilities partner with palliative care providers to offer additional services for residents who require ongoing palliative care.

If your family member is currently living in a nursing home or other long-term care facility, it is important to consider whether or not their palliative care may be administered by the community’s existing staff or if administrators will work with outside palliative care providers to coordinate their care.

Palliative Care In Hospitals

As noted earlier, 65% of U.S. hospitals now offer inpatient palliative care programs. In these programs, palliative care specialists work with patients and their families to provide symptom relief as well as emotional and spiritual support.

It is important to note that palliative care programs do not replace curative treatments or other medical care. If your family member requires palliative care in a hospital setting, palliative care physicians, nurses, therapists, counselors, and social workers will work alongside physicians and staff from other medical specialties to provide comfort care and alleviate symptoms and suffering while your family member also receives curative treatment.

Questions To Ask A Palliative Health Care Provider

Although your family member’s needs, circumstances, and preferences are unique, some questions are listed below that you may want to consider asking when researching a palliative health care provider. These questions are organized by the type of palliative care your family member may require.

In-Home Palliative Care

  • What specific services do you offer?
  • Who does the palliative care team consist of?
  • How are team members trained?
  • How frequently will team members visit the home and how long will they stay?
  • Will my family member always have the same staff?
  • Do you offer individual therapy and/or family counseling?
  • Do you have experience providing palliative care to people with curable and terminal conditions (be sure to ask about your family member’s specific symptoms, stresses, and concerns)?
  • Are you able to provide end-of-life care/hospice care?

Outpatient Palliative Care

  • What specific palliative care services do you offer? Are all services offered at the same location or facility?
  • How often will my family member need to visit the facility and how long are visits typically?
  • Who does the palliative care team consist of?
  • How are team members trained?
  • How many team members are on staff?
  • How do you communicate and collaborate with other providers (hospitals, clinics, in-home health aides, etc.)?
  • Do you have experience providing palliative care to people with curable and terminal conditions (be sure to ask about your family member’s specific symptoms, stresses, and concerns)?
  • Are you able to provide end-of-life/hospice care?

Palliative Care In A Long-Term Care Facility

  • What specific services do you offer?
  • Can staff members provide palliative care or do you work with outside providers?
  • How is palliative care provided in conjunction with other care provided at the facility?
  • How are individual needs assessed and how are palliative care plans designed to meet individual needs and preferences?
  • Are staff members trained to provide palliative care? If so, how?
  • How many palliative team members are on staff? During the day? At night?
  • Do you have registered nurses on staff at all times?
  • Is there a visiting physician?
  • Do you provide individual therapy and/or family counseling? Are there support groups?
  • How are patient’s palliative care needs reassessed over time and how are care plans updated to meet changing needs?
  • Do you have experience providing palliative care to people with curable and terminal conditions (be sure to ask about your family member specific symptoms, stresses, and concerns)?
  • Are you able to provide end-of-life/hospice care?

Palliative Care In A Hospital

  • What specific palliative care services do you offer?
  • How are individual needs assessed and how are palliative care plans designed to meet individual needs and preferences?
  • Who does the palliative care team consist of?
  • How do your palliative care specialists work with the other physicians, nurses, and medical professionals to communicate about patient needs, symptoms, and care?
  • How many palliative care specialists do you employ? Are they on staff 24/7?
  • What steps are taken to monitor changing medical and palliative care needs?
  • Do you offer individual therapy and/or family counseling? Are there support groups?
  • How do palliative care plans differ to accommodate the needs of those with specific illnesses and medical conditions?
  • Do you have experience providing palliative care to patients with a wide variety of curable and terminal conditions (be sure to ask about your family member’s specific symptoms, stresses, and concerns)?
  • Are you able to provide end-of-life/hospice care?

How To Pay For Palliative Care

Medicare and Medicaid, as well as most private insurance plans, will usually cover some or all of the costs of palliative care. The extent of coverage is usually dependent upon two factors: 1) the setting in which palliative care is administered, and 2) whether or not your family member is receiving hospice care.

Medicare

Medicare will often cover most of the cost of palliative care that is administered in a hospital setting, at a rehabilitation center, or in a skilled nursing facility, as this is often considered medical (rather than custodial) care, and hospice care is almost always covered. Outpatient and in-home palliative care is less likely to be covered by Medicare, as it is more likely to be considered custodial care, although some services such as pain management are generally still covered. If your family member is covered by Medicare, it is important to understand what specific services are covered and to be aware of any copays or fees your family member will be responsible for.

Medicaid

Since Medicaid often covers the cost of long-term care (and not just medical care), Medicaid will often cover most or all of the costs of palliative care. If your family member meets the functional and financial eligibility requirements in their state of residency, it is likely that a substantial portion of their palliative care may be paid for using Medicaid. As always, it is important to find out what specific services are covered and ask about any copays or fees your family member is likely to incur. Learn more about your state’s Medicaid program here.

Private Insurance

Like Medicare, most private health insurance plans will cover a substantial portion of your family member’s palliative care if it is administered in a hospital, rehabilitation center, or skilled nursing facility. Hospice care is also usually covered. Most private health insurance plans will not cover in-home or outpatient palliative care, with the exception of certain symptom-control services like pain management.

Veterans’ Assistance

If your family member has served in the armed forces and receives their health care through the Veterans Health Administration (VHA), it is likely that most or all of their palliative care will be covered. Palliative care is included in the VHA’s Standard Medical Benefits Package so all enrolled veterans are eligible to receive palliative care provided that they meet the “clinical need” for service.

Palliative Care FAQs

1. Does my family member need palliative care?

If your family member is suffering from debilitating or distressing symptoms related to a life-threatening medical condition or terminal illness, palliative care may be able to help ease their suffering, provide emotional and/or spiritual support, and improve their quality of life.

If you think your family member may benefit from palliative care, a good first step is to speak with their physician to learn more about the available options.

2. Can my family member receive curative treatment and palliative care at the same time?

Yes. Palliative care can be administered in conjunction with curative treatment.

3. Can my family member receive palliative care in their home?

Yes. Palliative care can often be administered in your family member’s home, depending on their geographic location and condition. However, it is important to remember that unless they are currently receiving hospice care, Medicare and most private health insurance companies will not cover the cost of in-home palliative care.

If your family member qualifies for Medicaid, some or all of their in-home palliative care may be covered. Learn more about your state’s Medicaid program here.

4. What role does palliative care play in hospice care?

Hospice care is specifically designed for individuals whose life expectancy is less 6 months or less and hospice care is not administered in conjunction with life-prolonging treatment.

Palliative care is arguably the most important component of hospice and end-of-life care. The goal of hospice care is to make your family member as comfortable as possible and to provide medical, emotional, and/or spiritual support to your family and your family member as they approach the end of their life. In this way, palliative care serves as the cornerstone of hospice care.

5. Does Medicare cover palliative care?

Medicare will usually cover the cost of palliative care if an individual is a patient at a hospital, rehabilitation center, or skilled nursing facility. Medicare also usually covers the cost of hospice care, regardless of where it is administered. Medicare will also often pay for certain outpatient palliative care services such as pain management and certain symptom-related treatments and palliative medicine.