Support systems
When time and preparation allow, perhaps the most potent source of support for dying patients and their families is the hospice system, which provides multidimensional support services during the dying process and after the patient’s death. Hospices nationwide are mandated to provide physical, emotional, spiritual, and bereavement support to patients, caregivers (whether relatives or paid staff), and families. These services can be provided to patients in their own homes, in assisted living facilities, in skilled nursing facilities, in hospice houses, and in hospitals.
The backbone of hospice care has always been to provide supportive care in the familiarity and comfort of the patient’s own home surrounded by family, friends, and pets. If that’s not possible, and if the patient doesn’t meet the criteria required for inpatient hospice care (a short-term need for acute medical management of symptoms), then the palliative care team, the patient, and the family must discuss other available locations for care. Respite care (up to 5 inpatient days) or continuous nursing care (a short-term need for 8 or more hours of personal care in the home per day) may be available to support the primary home caregiver. A recent survey found that about half of hospice patients died at home, about one-fourth in a nursing facility, and less than 10%each in a hospice unit or hospital.
Home support
If the patient chooses to be cared for at home and already has caregivers, help them construct a list of equipment that may be needed. Focus on their abilities and needs. Ask the patient and caregivers what they think they
might need. Don’t force them to accept care items they prefer not to use. Arrange for the equipment to be delivered, preferably so that it will be there when the patient gets home. This intervention at the very first interview already provides emotional support to the patient and family.
might need. Don’t force them to accept care items they prefer not to use. Arrange for the equipment to be delivered, preferably so that it will be there when the patient gets home. This intervention at the very first interview already provides emotional support to the patient and family.
Providing resources
In hospice care, a few things aren’t negotiable, the main one being a minimum of one nurse visit every 14 days. Not many families opt for this minimal level of interaction, but there are some very private people who feel they can manage on their own. They may want help with drugs and answers to any questions that arise, but they also may want as few interruptions as possible. The acknowledgment of and respect for their needs is yet another form of silent support.
Depending on the hospice organization and the patient’s choice, the patient will either retain his current physician or come under the care of a hospice medical director. Some attending physicians want to stay involved but prefer that a hospice physician with expertise in pain and symptom management take over that aspect of care. It’s your responsibility to make sure the physician of choice knows of any changes in the patient’s condition. This is especially important once the patient can no longer get to office visits. Occasionally, the patient’s physician may choose to make home visits; however, this is a luxury for most physicians, so they rely on the hospice staff for information.
Regulations may state that an RN or case manager must see a patient within 24 hours of admission to hospice. Although most families are agreeable, some feel that their condition doesn’t warrant an immediate visit or they’re exhausted from weeks of treatments and travel to hospitals and really don’t want another visit the day after admission to hospice. Remind them of the agency’s availability 24 hours a day by telephone for questions, concerns, or problems. Make sure to document that the family has declined the visit and why and when you plan to see them.
Helping the caregiver
Often a family caregiver is also elderly or ill. In such cases, the hospice and palliative care team must monitor the health and abilities of the caregiver as well. Providing a volunteer so the caregiver can see her doctor, convincing the patient to accept a hospital bed or bedside commode to relieve physical demands on the caregiver, and teaching multiple family members to care for a patient can help maintain the health of the primary caregiver. It also helps to let them know how valuable their service and support is.
When you go out to see the patient and caregiver, assess their home and their specific needs once they are settled in. Perhaps additional equipment will be beneficial. Also, set up a home health aide schedule as needed. The home health aide may visit only two or three times a week to start. If more frequent personal care is needed or requested, the schedule will be adapted. Although the aide is in the home for personal care of the patient, she can also:
provide respite for the caregiver to leave or have a nap or some quiet time
provide a meal for the patient
do the patient’s laundry
change the bed linens
tidy the living area.
As well as performing these physical tasks, the aide develops a rapport with the patient and family and provides emotional and possibly spiritual support.
In hospice care, volunteers are another important part of the interdisciplinary team and provide support to patients and caregivers. Some of the services they may provide include:
sitting with a patient while a caregiver goes shopping or to an appointment
running errands for the family
making support phone calls.
Some of the relationships formed between caregivers and volunteers continue for years. After the patient’s death, the primary role of volunteers is weekly or monthly phone contact with the surviving family members.
As the patient begins to decline, you and the home health aide should instruct and model for the caregiver how to turn the patient in bed, help him transfer to a chair, change his bed, and provide mouth care. The staff should assess and evaluate the caregiver’s abilities and needs and make recommendations with each contact.
Evaluate the patient’s pain and comfort level each time you visit. Teach the caregiver how to evaluate them as well, so the caregiver feels better able to help the patient with drug therapy and other comfort measures. Teach the patient and caregiver about each drug in the plan of care, its actions, proper usage, and common side effects. Also explain other treatments as needed, such as oxygen therapy, urinary catheter care, and prophylactic skin care. As patients and caregivers gain new skills, their confidence will increase and they’ll feel more empowered as part of the interdisciplinary team.
Complementary therapies
Complementary therapies such as massage therapy; physical, occupational, and speech therapy; and pet therapy may improve the quality of life for patients and caregivers. Other complementary therapies may be helpful as well. (See Complementary therapies and hospice.)
Massage therapy
Increasing numbers of hospices are including massage therapy as an integral part of patient and family care. Most patients who receive massage report reduced pain and anxiety and an improved sense of peacefulness. These are important indicators if we want to provide optimal physical and emotional support.
Physical, occupational, speech therapies
Physical, occupational, and speech therapy may have a role in supporting some terminally ill patients. The usual role for physical and occupational
therapy is to teach patients and caregivers how to use assistive equipment, transfer techniques, or adaptive techniques for activities of daily living. A speech therapist might work with a patient to improve swallowing, allowing him to drink or eat better and to better enjoy the taste and texture of foods. The speech therapist also might help a patient who’s losing his speech to develop alternative communication methods.
therapy is to teach patients and caregivers how to use assistive equipment, transfer techniques, or adaptive techniques for activities of daily living. A speech therapist might work with a patient to improve swallowing, allowing him to drink or eat better and to better enjoy the taste and texture of foods. The speech therapist also might help a patient who’s losing his speech to develop alternative communication methods.
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