Hospice and Its Impact on Caregiving and the Family
Hospice care is a specialized form of care that generally comes into play toward the end of one’s illness, when a patient has an expected life expectancy of 6 months or less and a cure or even slowing the advancement of illness is no longer the primary goal of care. Instead, it focuses on ensuring the patient has a comfortable quality of life and is pain-free during their remaining time. A heavy focus is often put on the social and emotional needs of the patient. The switch in focus from curative care to palliative care can be a difficult one for some patients and family members, but one that may be chosen when curative care does not provide relief from the illness.
Hospice care isn’t necessarily a place, although hospice care facilities do exist. Hospice care can be granted at nursing homes, in a patient or family member’s home, or in a hospital setting. In some cases, the management of a patient’s symptoms can be too difficult in their own home, and those patients can be transferred to the hospital or to a dedicated hospice care facility, if the need arises. Patients who wish to live out their lives at home have that option.
In the case of home care, hospice may offer respite care for patients. Respite care is a pre-arranged period during the day where a hospice professional comes into the home to care for a patient while their primary caregiver (often a family member) takes care of other necessary needs. Patients may also be taken to a dedicated care facility for certain periods of the day for respite care if that fits the needs of the patient and his or her family members better.
How Are Family Members Involved?
According to the American Hospice Foundation, family members are involved as much as they would like in the emotional and social well being of the patient. Some family members, however, may find it difficult to differentiate between providing emotional support and providing medical support. In the case of many advanced illnesses, family members have spent months, if not years, caring for a patient and dealing with the medical fallout of the situation, and relinquishing that control can be a truly difficult task, especially for those who have not actively grieved the loss that suddenly seems imminent for hospice care patients.
Depending on the type of hospice care being offered to each individual patient, family members may find that their role is relatively unchanged in the lives of the patient. Other’s find that hospice care can offer family members the services and time they need to focus on the patient and enjoying the time left with them, rather than providing the patient with medical care. This can help family members and patients recount memories, share experiences, and properly say goodbye. Coming to grips with the end of life is never an easy task, even when an illness has been especially long. Hospice care often focuses their efforts on ensuring all members of a family unit are looked after, not just the ill patient.
What Services Does Hospice Care Offer to Family Members?
Family members of a terminally ill patient may be entitled to services through hospice care, just as the patient is entitled to services. The goal of hospice care is to make the patient as comfortable as possible so they can enjoy a good quality of life for the time they have remaining. Part of that protocol is ensuring that the loved ones of that patient are well cared for, too. The goal is to provide the medical care needed to make patients comfortable during the end of their illness, but the other part of hospice care is creating an environment where patients can thrive during the end stages of their illness.
According to American Academy of Hospice and Palliative Medicine, family members may be entitled to bereavement counseling. Often times, when a patient is terminally ill, or at the end stages of an illness, family members find they haven’t had the time needed to assess the situation and grief the loss of their loved on. They have been too wrapped up in medical appointments and dealing with the “right now,” to be able to properly think the entire process through. This is where bereavement counseling comes in. Bereavement counseling can begin while the patient is still in hospice care and continues through the first year after the end of the patient’s life.
Hospice care also provides social workers that can take on a family’s case. The goal of a social worker is to act as a community advocate so family members do not have to. This frees up more time for family members, and allows them to interact socially with the patient and enjoy their company during their hospice stay.
Family members who are working as round-the-clock caregivers for a patient at the end of a serious illness can also use respite care. Respite care simply ensures the patient is in a safe, monitored environment while family members attend to other needs. This can bring a great deal of peace of mind to family members who have been caring for a sick loved one around the clock. It also gives them the necessary breather to process what is going on and deal with their own well-being and feelings.
The Bottom Line
Hospice and palliative care is a process that has many myths surrounding it. Some argue that entering hospice is akin to giving up hope. Some suggest that hospice care removes the family from the equation and focuses completely on the patient. Both of these statements are a myth. Hospice is about providing a comfortable experience for both the patient and the family of the patient as they come to terms with the end of a life-altering illness. Hospice isn’t about taking away hope, or removing power from the family unit. It is about changing the thought processes during a difficult time and helping a family share experiences and grief together in a comfortable, safe environment.
A graduate gerontology degree, paired with your professional experience, can prepare you to make an impact on the lives of older adults or hospice patients. Learn more about the Master of Arts in Gerontology online program at USC.