Families & Caregivers During Hospice

Hospice can help prevent caregiver burnout in a number of ways. Although most of the day- to-day physical needs of a person receiving hospice care are attended to by family caregivers, hospice staff can offer advice, emotional support, and much-needed respite care. If the caregiver is experiencing extreme distress, they may also provide a referral to a mental health professional who can help that person sort through their feelings and develop more robust coping skills. Hospice staff and volunteers are also well-versed in the kinds of stressors that family caregivers face, and can often suggest concrete ways to lessen the burden when the caregiver(s) feel overwhelmed. 

Caregiver burnout: What is it?

Thanks to advances in science and medicine, many people suffering from a terminal or life-limiting illness today live far longer than they would have even a few decades ago. Further, more and more people approaching the end of life are being cared for in their homes. According to data from the Centers for Disease Control and Prevention, between 2000 and 2018,, the percentage of people who died in hospitals fell from 48% to 35%, while the percentage of people who died in their own homes rose from 22.7% to 31.4%. And while some of those home deaths undoubtedly occurred suddenly, about 7 in 10 are attributable to chronic diseases, according to the CDC. 

What this means from a practical standpoint is that illness trajectories are longer, and fewer sick patients are being cared for in hospitals than any time in the recent past. As a result, more and more family members find themselves in the position of caring for a spouse, sibling or aging parent in their home over many months and even years. This can lead to many different levels of stress and distress, from financial challenges (for example, if someone had to quit their job to take care of the loved one) to exhaustion, anxiety, depression and poor physical health. Eventually, the caregiver may develop feelings of anger and resentment towards the person needing care — challenging emotions that may lead to feelings of guilt and shame. Many family caregivers develop poor eating habits, sleep irregularly and lose contact with other family members and friends. Isolated and overwhelmed, they may eventually descend into the state of physical, emotional and mental exhaustion known as caregiver burnout, which is characterized by anxiety, depression, hopelessness and compassion fatigue. In some extreme cases, a burnt out caregiver may actually neglect or actively harm to the person they have been caring for.

Specific ways in which hospice can help

Caregiver burnout is a sign that a family caregiver is handling more responsibility that they can reasonably manage given the physical, psychological and financial resources available to them. Strategies for preventing or alleviating burnout, therefore, are those that ease the burden of caregiving or increase the resources available to provide care. Hospice can assist with this in various ways, such as:

• Providing respite care so the caregiver can take time for themselves to attend social events, read a book or take a leisurely bath.
• Arranging for volunteers to take care of household chores such as doing laundry, grocery shopping, picking up dry cleaning or cooking a meal
• Ordering equipment and supplies that can make caregiving easier, such as a wheelchair, walker, hospital bed, bedside commode etc. 
• Providing telephone advice when circumstances change, such as when the patient needs more pain medication, sedation or a medication for nausea or vomiting
• Arranging inpatient care if the person who is sick needs emergency care
• Offering support and guidance in identifying resources in the family or community that can help with the person’s care. Oftentimes, family caregivers fail to ask for help because they believe they “should” be able to handle the responsibility of caring for their loved one alone. Hospice staff can help them frame their thinking differently and begin to involve others in the person’s care. 
• Connecting the caregiver to online support groups. The Alzheimer’s Association, for example, offers online support groups and a free online community message board where those caring for someone with dementia can reach out for support.
• Connecting the caregiver to potential sources of financial assistance, including government programs such as SNAP. They can also assist the caregiver in finding out if their state’s Medicaid program offers pay to family caregivers, and if the person who is ill qualifies for assistance through the Department of Veterans Affairs.

Sources

“About Us”. National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). https://www.cdc.gov/nccdphp/about/?CDC_AAref_Val=https://www.cdc.gov/chronicdisease/center/index.htm 

“Caregiver Burnout”. Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout 

“Are you experiencing compassion fatigue?” American Psychological Association. https://www.apa.org/topics/covid-19/compassion-fatigue 

“Support Groups”. Alzheimer’s Association. https://www.alz.org/help-support/community/support-groups 

Although the main goal of hospice is to ensure the comfort and well being of people approaching the end of life, it provides many benefits to families as well. Since the majority of hospice care happens in the home, family members ultimately become primary caregivers, managing the day to day needs of their loved one. Hospice becomes the support system designed to assist families through end of life care of the patient. Knowing that they are supported in keeping a loved one in the comfortable, safe, and loving environment of home can increase peace of mind for families. The benefits of a revolving team of specially trained staff, respite care, volunteers, and grief support services may also help families cope with their loved one’s end-of-life care and subsequently, their death.

Education is a cornerstone of the support caregivers will receive from the hospice team. Knowing what to expect and how to address issues that may crop up can empower families to feel more confident in their caregiving role. The case manager or primary nurse collaborates with families to develop a unique and tailored care plan best suited to the needs of the patient, and everyone in the home. This may include things like the best time of day to schedule weekly nursing visits and setting treatment goals.

Families may also receive hospice education on the following:

• Pain prevention and treatment
• Medication management
• Fall prevention
• Patient care; repositioning
• Wound care (if appropriate)

All medications and medical equipment are delivered to the home, relieving caregivers of the burden of leaving the home to get them. Families have access to hospice 24 hours a day for any questions or concerns. An on-call nurse will triage the patient’s acute symptoms via phone and instruct the caregiver on how to manage those accordingly. Every family is provided with a comfort kit (various medications used to treat pain, constipation, agitation, and shortness of breath) upon patient admission. This is so caregivers have whatever the patient may potentially need in a crisis on hand to bring immediate relief. A nurse will visit the following day to ensure patient comfort. However, the on-call nurse will come sooner if the family is unable to quell patient symptoms on their own. If a crisis cannot be averted, inpatient care may be warranted.

Other staff support can further ease family caregiver burdens. A certified home health aide will come to the home up to several times a week to assist the patient with things like bathing, grooming, dressing, feeding, and changing bed sheets. Social workers can provide families with additional resources including private home health aide companies for hire or referrals to ancillary providers such as podiatrists and hair stylists who will come to the home to provide services. They can also be instrumental in helping families complete financial, legal, or funeral paperwork that might otherwise feel too overwhelming.

Aside from easing stress caused by the physical demands of patient care, hospice staff can address mental and emotional needs for families, as well. Caring for a loved one while maintaining self-care may seem overwhelming at times. The social worker can request a volunteer to come sit with the patient, so caregivers can leave the home for a few hours for a much-needed break. Families can also request respite care. In these situations, patients may be transported to an inpatient or approved long-term care facility for up to 5 days, so families can attend special events or take a short vacation.

Chaplains, or spiritual counselors, are also part of the hospice team. They can provide guidance to both patients and families that is specific to religious beliefs or more non-denominational oriented if desired. Upon request, chaplains can also help to arrange for a priest to come to the home to perform the sacrament of the sick ceremony for the patient and pray with the family.

Bereavement support for families

After the patient dies, hospice benefits provide long-term grief and bereavement support for families for up to 13 months. This may include continued visits with the social worker or chaplain if the family is struggling to cope with the loss. Group and individual grief counseling may be offered virtually or in person. Some hospice providers also offer counseling specific for children who have lost a parent or other close family member. Referrals can be made to families that may need additional help in coping with the death of their loved one. 

Sources

“Bereavement Care”. CaringInfo. https://www.caringinfo.org/types-of-care/bereavement-care/