Edited by: Adam Vega, CFP®
July 3rd, 2023
As your loved one ages and struggles against an onset of illness, it is important to understand the role hospice care plays in long term care. As their primary caregiver, you will need to make important decisions about what care they receive and when. After reading this article we hope that you will have built a solid understanding of hospice care and will be comfortable making the important decisions surrounding it.
What is Hospice Care?
Hospice care is a specialized type of care designed to provide comfort, pain management, and emotional support to individuals with a terminal illness and their families. The primary focus of hospice care is to ensure that patients can maintain the highest possible quality of life during their final days, by addressing their physical, emotional, and spiritual needs. This approach is often referred to as "comfort care" or "palliative care," which seeks to alleviate suffering rather than cure an illness (National Institute on Aging).
Hospice care is delivered by a multidisciplinary team of healthcare professionals, including physicians, nurses, social workers, chaplains, and volunteers, according to the National Institute on Aging. Together, they provide personalized care tailored to the unique needs of each patient and their family. This includes medical care, pain and symptom management, emotional and spiritual support, as well as assistance with daily living activities (Caringinfo).
The informational website Caringinfo shares that hospice care is often misunderstood and “is equated in many persons minds with imminent death,” while it is actually appropriate for anyone with a life-limiting illness who has a prognosis of six months or less, should the disease follow its natural course. The goal of hospice care is not to hasten death, but rather to help patients live as fully and comfortably as possible, surrounded by their loved ones in a supportive environment.
By opting for hospice care, families can take advantage of a wide range of services that can provide relief and peace of mind during a challenging time. The hospice team works closely with the patient and family to develop a personalized care plan, which may include physical therapy, counseling, and bereavement support, among other services (National Institute on Aging).
Who is eligible for hospice care?
As mentioned above, hospice care is typically recommended for patients with a terminal illness who are facing their last six months of life. Although hospice care is often associated with cancer, it is important to note it also serves individuals with other life-limiting illnesses, such as heart disease, dementia, and chronic obstructive pulmonary disease, COPD, (National Institute on Aging).
Eligibility for hospice care is determined by a patient's physician and a hospice medical director. They consider factors such as the patient's overall health, the progression of the illness, and the patient's goals and wishes for care (NHPCO, 2021). It is important to have open and honest conversations with the patient's healthcare team to determine if hospice care is the appropriate choice.
In the United States, hospice care can be covered by Medicare, Medicaid, or private insurance plans for eligible patients. NHPCO divulges that coverage typically includes medical services, medications, supplies, and equipment related to the terminal illness, as well as bereavement support for the family. Bereavement includes “counseling or grief support” for an hospice patient’s family, NHPCO.
It is important to remember that hospice care is not a one-time decision. If the patient's condition improves or stabilizes, they may be discharged from hospice care and resume curative treatments. Should the patient's condition worsen in the future, they can be readmitted to hospice care (Medicare.gov.).
Where can your aging relative receive hospice care?
Hospice care can be provided in various settings, depending on the patient's needs and preferences. The most common setting is the patient's home, where they can be surrounded by familiar surroundings and loved ones. Home-based hospice care allows patients to maintain their independence and comfort while receiving comprehensive care from the hospice team.
In addition to home-based hospice care, hospice services can also be provided in nursing homes, assisted living facilities, and dedicated hospice centers (National Institute on Aging, n.d.). These settings provide additional support for patients who require a higher level of care or assistance with daily living activities. It is important to discuss the most suitable setting for hospice care with the patient, their family, and the hospice team, taking into consideration factors such as the patient's medical needs, personal preferences, and available resources.
Hospice care may also be provided in a hospital setting for patients who require acute care, such as pain management or symptom control that cannot be effectively managed at home or in another facility. In this case, the hospital-based hospice team will work alongside the hospital staff to ensure the patient receives appropriate care and support. NHPCO shares that this type of care also serves to “provide temporary relief to the patient’s primary caregiver,” allowing them a break from the strenuous load of caring for their aging relative.
Regardless of the setting, hospice care continues to provide personalized, compassionate care that addresses the physical, emotional, and spiritual needs of a patient and their family. Because of hospice care’s variety of settings, hospice services can be tailored to the unique needs and preferences of each individual, ensuring the best possible quality of life during their final days.
What is the difference between palliative care and hospice care?
Palliative care and hospice care share a common goal of providing comfort and support to patients with serious illnesses, but there are some key differences between the two. Palliative care can be provided at any stage of a serious illness, not just during the final months of life, and can be offered alongside curative treatments, according to the National Institute on Aging. Palliative care focuses on managing symptoms, improving quality of life, and supporting patients and their families as they navigate the challenges of a serious illness.
The main difference between this and hospice care, is that the criteria for a hospice care patient includes that they are in their last six months of life, while palliative care does not. Hospice care is typically provided for “people who have stopped treatments to cure or reverse a disease,” and the focus shifts to comfort and support during the final stages of life (Sutter Health).
While both palliative care and hospice care prioritize the patient's comfort and quality of life, the timing and scope of services provided differ. It is important for patients and their families to discuss their care options with their healthcare team to determine the most appropriate course of action based on the patient's unique needs and preferences.
Four Basic Levels of Hospice Care
There are four general levels of Hospice care, according to Vitas. These levels include:
- Hospice Care at Home
This level of hospice care includes “routine visits from a home hospice care team,” as well as all of the medical equipment your loved one may need (Vitas). The hospice care team ensures that your loved one is living comfortably at your home, and provides your family with the resources necessary to consistently uphold this care, even when the team is not present.
2. Continuous Hospice Care
This level of care is for aging patients who need some sort of constant assistance or attention from a medical professional. More specifically, this type of hospice care is for those who are considered to be in a “crisis”. The care provided by continuous hospice care works to meet a patient’s needs at home, keeping them from “being admitted to an inpatient care facility,” so that they may receive the necessary care without being forced out of their home (Aria Hospice).
3. Inpatient Hospice Care
Inpatient Hospice Care is similar to continuous hospice care, except for the location. In this case, the patient receives care at a facility, oftentimes a hospice center in a hospital or long term care facility. Patients who receive inpatient hospice care are typically in “a crisis that requires symptom management,” that their family is unable to provide (Omni Care). Being in a facility allows them to receive the constant, advanced, medical attention they need.
4. Respite Hospice Care
Respite care is another level of hospice care that can exist outside of the home. Hospice respite care is an option for caregivers who need rest or feel overworked while caring for their aging or ill relative. This type of care is typically found in “Medicare-certified inpatient hospice setting[s]” and offer care for a brief period of time, so that you, as a caregiver, can avoid burnout (Vitas).
How to prepare your family for hospice care.
Preparing your family for hospice care can be a challenging and emotional process. Open communication is essential in helping everyone understand the goals of hospice care and what to expect during this time. When the time comes, “be sure to involve your loved one in these conversations,” and encourage family members to share their feelings, concerns, and questions openly, according to VNA Health Group.
Educate yourself and your family about hospice care by seeking reliable resources, such as the National Hospice and Palliative Care Organization (NHPCO) and the National Institute on Aging. Understanding the philosophy and benefits of hospice care can help alleviate fears and misconceptions that may arise during this time.
Discuss the practical aspects of hospice care with the hospice team, such as the services that will be provided, the roles of different team members, and the patient's personalized care plan. This can help your family feel more prepared for your loved one’s care process. Additionally, make sure to clarify any concerns or questions regarding insurance coverage, costs, and eligibility with the hospice team or the patient's healthcare provider (Medicare.gov).
Finally, consider seeking support from external sources, such as support groups, therapists, or spiritual advisors, to help your family cope with the emotional challenges associated with hospice care. The hospice team can often provide referrals or resources for additional support services tailored to your family's needs (National Institute on Aging).
Hospice care is designed not only to support patients but also to provide much-needed assistance to their families during a challenging time. One crucial aspect of family support offered by hospice care is emotional and spiritual guidance, which helps families navigate the complex emotions they face as their loved one reaches the end of their life. Hospice care teams consist of professionals like chaplains, counselors, and social workers, who are trained to help family members address their feelings of grief, loss, and stress, while also providing spiritual support tailored to their individual beliefs and values (TriHealth). This holistic approach to emotional care ensures that families feel supported, understood, and better equipped to cope with the difficulties they encounter during the hospice journey.
Another key aspect of family support in hospice care is education and practical assistance. American Hospice Foundation shares that hospice care aims to involve the entire family in the care process, offering guidance on how to care for their loved one while also ensuring they have access to the necessary resources and information. This education enables families to make informed decisions about their loved one's care, empowering them to take an active role in the process. Furthermore, hospice care teams provide practical assistance, such as managing medications, coordinating care services, and addressing any medical issues that may arise, which helps alleviate the burden on family members and enables them to focus on spending quality time with their loved one.
Lastly, hospice care offers bereavement support for families, helping them navigate the grieving process both before and after the loss of their loved one. Hospice care teams often provide grief counseling and bereavement support groups, allowing family members to share their experiences, gain emotional support, and access resources to help them cope with their loss (High Peaks Hospice). This ongoing support can be invaluable for families, as it offers a safe space to process their emotions, learn coping strategies, and ultimately heal from their loss.
In conclusion, understanding hospice care is essential for caregivers to provide the best support and care for their aging relatives during their final days. By educating yourself about the goals, eligibility criteria, available settings, and differences between palliative care and hospice care, you can make informed decisions and prepare your family for this critical stage in your loved one's life. Open communication, education, and support will ensure that your family is well-prepared to navigate the challenges of hospice care with compassion and understanding.