What is the family role in hospice care? Family does most of the work in caring for the terminally ill, and much of what hospice workers do is support families.
The Family Role in Hospice
Hospice health care workers are as dedicated a bunch of people as you’ll ever see. Across the country, professional hospice caregivers work long hours to provide excellent care to those whose time is limited. And yet, when it comes down to it, the efforts of nurses, home health aides, physicians, and all the other hospice staff pale in significance compared to the love and gentleness that comes from the patient’s family. When it comes down to it, the family role in hospice outweighs just about anything professional caregivers provide.
This is not to say that professional caregivers are an insignificant lot, forgotten as soon as they walk out the door. Far from it: we help make people’s last months as good as possible by managing their pain, providing therapies, giving social support, and so much else, and we know that patients and families alike are grateful for the support we offer. But patients are closest to their families; they want and need their families to be with them, and families provide care to their ill loved ones in ways that hospice caregivers cannot.
Caring for the Patient
Most of the time, family caregivers are the ones who look after the home hospice patient. This is a simple matter of logistics: professional caregivers have large caseloads and cannot be in every home 24/7. Family members are the first line of support when the patient needs something. If the patient has a complaint, needs help eating or getting dressed, or forgets his medication, the family will be the first to respond, ready to deliver care at a moment’s notice. Seen from this perspective, the hospice’s home health aides support families as much as patients, giving family members a respite from providing round-the-clock care.
Family members should ensure that the patient’s environment is a calm, relaxed one suited to her needs and capabilities. Here are just a few of the ways that family can improve their loved one’s environment.
- If the patient is ambulatory, clear out any tripping hazards.
- If the patient cannot walk, make sure she can reach what she needs on the bedside table.
- If she can control the lights and the temperature herself through remote controls, then she can choose what’s best for herself.
- Provide her with a means of calling for help without having to shout.
- Round doorknobs are notoriously difficult for arthritic hands to turn; replace knobs with levers whenever possible.
- Harsh overhead lights and loud noises from the kitchen nearby are an impediment to sleep.
- Open windows are lovely to look through, but are an annoyance if the sun streams onto the patient’s face during nap time.
- Make the room itself pleasant. Even something as simple as fresh flowers to brighten up the patient’s room can have a calming effect.
Family members, of course, have a much closer connection to the patient than health care workers. Nurses and other hospice workers are great at anticipating the needs of their patients, but all the specialized nursing training in the world cannot match the sensitive connections between family members. A nurse might dismiss a patient’s low mood as temporary grumpiness, but the family will realize that the mood indicates severe depression. Similarly, some patients tend to try to mask their pain. A visiting concierge physician might not realize that the patient could benefit from stronger pain medication, but the family can see the subtle signs of pain: pinched eyes, tightly clasped hands, and the like. Other patients are just trying their best to be polite to hospice staff, whom they view as guests in their home: “I wouldn’t dream of making more work for the staff!” (This was an actual comment overheard by one of our nurses.)
This is especially a concern for patients who struggle with communicating. Speech therapists can help patients learn to communicate, but sometimes this cannot extend beyond communicating basic needs; emotional and spirituality care might fall by the wayside. In such times, the family needs to pay especially close attention to the patient, as they will have an easier time understanding her needs than hospice staff who don’t have a lifetime of experience with her. Families should not be shy about voicing their worries to hospice workers, as by doing so, they’ll enable the professional givers to provide better care.
We know that families and patients value the help that professional hospice staff gives, but nothing compares to the company of loved ones. The importance of emotional support cannot be overstated: patients who have a foundation of emotional support are less stressed, need less pain management, and feel better prepared for whatever happens next, and this makes all caregiving activities easier for everyone involved.
Hospice workers are gentle and provide emotional cushioning whenever they can—it’s hard not to feel emotionally responsible for someone you care for physically, and all hospice workers have felt the pang of loss when a favorite patient passes away. But the best, closest emotional care comes from the people who know the patient best. This emotional care does not always have to be in the form of long, heavy conversations about death and regrets about missing out on aspects of life. Sometimes, emotional support just means helping the patient do what she likes best: playing music, baking sweets, or reading books. Occupational and physical therapists can help patients do any such enjoyable activities.
Family caregivers can also provide support by arranging visits from extended family members. Regular visits help the patient feel connected with her family, letting her know she is loved and that everyone is thinking about her. In-person visits, phone calls, and virtual visits are all good, but family members should keep a close look on the patient’s mood. Too many visits in a day can be enervating, and they should be timed so that they don’t conflict with caregiving visits.
Families and the people within them are complicated, and sometimes it can be uncomfortable and emotionally draining to spend time with a terminally ill loved one. There might be long-buried, unresolved issues between the patient and her family, with nobody knowing how to work through such issues. Or maybe the family caregivers are pursuing hectic lives with children, careers, and health issues of their own, and don’t know if they have the emotional fortitude to help the patient with her worries about mortality. Just remember, the comfort of the patient is always the top priority in hospice care. Hospice chaplains are trained to help patients and families work through these weighty matters, and patients and families alike should not be shy about requesting emotional support from their assigned chaplains.
End of Life Planning
These are difficult topics to talk about, but delaying their discussion helps nobody. Hospice care means that the patient’s life will end soon, and the family will have to deal with a funeral and financial planning whether they are prepared or not. Dealing with these topics early on in hospice care lets family members devote their attention to the physical and emotional needs of the terminally ill person and lets the patient feel reassured that her affairs are in order.
Funeral preparation begins long before death, and the family, ideally, should have the patient’s funerary wishes sorted well before the end. They should also take care of financial planning as soon as possible. If the patient has a will, they should know which legal firm it sits with and its broad-stroke contents; if not, then the family should be prepared to help the patient sort out her finances.
An important topic to discuss early on in hospice care is the patient’s advance directive, sometimes called a living will. This legal document establishes what the patient wants to be done when she is unable to make decisions for herself: who can make decisions for her, the kinds of life-extending treatments she wants or doesn’t want, and other such matters. Advance directives do not have to be impenetrable, extensive legal documents; many are written in everyday language and are yet legally valid. Hospice social services can help with drafting one.
Hospice Supports Families
The patient’s comfort is the top priority in hospice care: that is the guiding principle behind our work as professional home hospice caregivers. But the family role in hospice is greater than our own. The family is at the patient’s side 24/7, looking after her whenever our workers are not around, and the family’s close connection with the patient means that they can anticipate her needs in a way that we cannot. By looking after the patient’s physical, emotional, and spiritual needs, families ensure that their loved one’s final days are filled with peace and dignity.
Families are also the prime advocates for the terminally ill. If the patient cannot or will not speak up for herself, it falls to families to inform us how we can provide better care. As dedicated home hospice providers, we at UCLAH pride ourselves on working with families in providing top-quality care. Please contact us if you have a need for home hospice services.