Full hospice care means meeting caregivers’ needs

Training will boost their confidence

Caring for the dying is an enormous responsibility. No one knows this more than the nurses, social workers, and chaplains who do it day in and day out as hospice workers. The presence of these hospice workers in the home is a welcomed respite for loved ones who must provide the bulk of the care.

But what happens in between visits? Often, the caregiver is left feeling isolated and overwhelmed. One way to ensure quality care in the absence of staff is to teach loved ones how to be better caregivers.

"The No. 1 priority is safety: Is the patient safe?" says Elizabeth Pitorak, MSN, APRN, CHPM, director of the Hospice Institute at the Hospice of the Western Reserve in Cleveland. "The assessment will play a key role in determining the kind of training the caregiver should receive."

Given that family members play such a pivotal role in caring for the dying patient, hospice staff need to attend to the needs of the caregiver as well to the needs of the patient. Attention needs to be paid to not only teaching caregivers the mechanics of caring for a loved one — how to give a bed bath or monitor instruments, for example — but also to help caregivers recognize their own needs and limitations.

According to Pitorak, staff should focus on the following areas to help family members become better caregivers:

  • physical concerns;
  • emotional needs;
  • role and relationship of caregiver in the family structure;
  • spiritual concerns;
  • understanding of the dying process.

One of the major themes of hospice care is pain management. A focus on palliative care will do much to improve the quality of the remaining days of a patient’s life. While hospice workers understand this philosophy, family members and caregivers may not. They often are reluctant to administer pain medication out of fear of overdosing the patient or contributing to addiction.

Hospice staff need to help caregivers understand that pain is a reality in their loved one’s life and that pain medication is designed to improve the quality of the life that remains, Pitorak says. Further, staff must stress the importance of keeping up with scheduled medication to avoid causing the patient undue pain. As staff train caregivers in how to administer the medication, they should tell caregivers about the side effects of the medications being used to avoid surprises that could result in noncompliance or misuse.

"The object is to take the fear out by giving them the knowledge they need to feel confident," Pitorak says.

Staff also must be aware of physical concerns relating to the caregiver. A common concern is whether the caregiver is getting enough rest due to the round-the-clock duties of caring for the patient and tending to household responsibilities. It is often easy to focus primarily on the patient and miss the warning signs of a caregiver in need of care.

The best way to keep on top of caregivers’ needs is to establish a rapport with them, keep lines of communication open, and show concern for both the patient and the caregiver.

One of the roles a caregiver has is to help a loved one accept that he or she has a terminal illness. Patients often deny they are sick and avoid necessary treatments — medical or otherwise — that negatively impact their quality of life.

A caregiver must also be able to encourage the patient to share his or her feelings about the situation, including fears about leaving loved ones behind. To do so, caregivers must be able to discern the proper times to elicit open conversation and avoid communicating through heated arguments.

As patients are faced with their mortality, they begin to inventory life’s unfinished business, activities they have always wanted to do, or broken relationships they have long wanted to mend. Caregivers should play a major role in improving their loved one’s life by helping tie up these loose ends.

But caregivers cannot attend to the above tasks if they are not on a solid emotional foundation themselves. So, in order to empower caregivers to be supportive and attentive to the needs of the patient, hospice staff need to attend to the emotional needs of the caregiver.

This begins by assessing the caregiver’s ability to cope, says Pitorak. It is common for the caregiver’s coping abilities to be impaired by the knowledge of a loved one’s terminal illness. Staff should assess the caregiver’s knowledge of the disease. The ensuing discussion will likely yield insight into the caregiver’s fears and expectations and offer signs of anxiety and depression that must be dealt with.

"Help them cope. Empower them by helping them re-identify coping mechanisms," Pitorak says.

Roles and relationships

Emotional needs are affected in part by the roles and relationships caregivers and patients play in the family structure both before and after the diagnosis. For example, what seems like denial may be the patient’s attempt to protect loved ones from what is really happening. The caregiver needs to be able to reassure the patient that the caregiver is willing to discuss all aspects of the illness, no matter how difficult it may be for both parties. This should help the patient get past this form of protection and allow the patient to prepare for his or her own death, says Pitorak.

What often triggers fear and anxiety among dying patients is the thought of leaving behind a spouse or family that is unprepared to carry on after the patient dies. An elderly man who handled the family finances could fear that his wife will founder financially. Or an elderly woman who prepared all the family meals may be concerned that her husband won’t eat with no one to cook for him.

For both sides to be at peace, there needs to be a dialogue between the patient and caregiver, and this can be facilitated by hospice staff. Both the caregiver and the patient need to be able to tell each other what their fears are.

If, for example, the issue is self-sufficiency of the survivor, then the hospice staff should help both sides address their concerns. If the wife fears her husband will not be able to prepare his own meals, the hospice worker should work with the husband to devise a plan that will improve his cooking skills, which should be demonstrated to his wife.

"In order for the patient to have peace, you have to teach the caregiver to be self-sufficient. Encourage the caregiver to care for themselves," says Pitorak.

Professional caregivers must also help family caregivers work through important family issues. Patients and caregivers, for example, may disagree on issues such as when and how to share their feelings.

Hospice workers can help facilitate the resolution of outstanding issues in these ways:

Tell caregivers their needs matter

Get caregivers to explain their needs openly.

Caregivers need to be taught that their feelings and needs matter and that they should feel that they can ask the patient to do something that will make their lives easier or their caregiving responsibilities more manageable. For example, it is not unreasonable for a caregiver to ask a loved one to give notice when any pain arises, rather than waiting until it becomes so severe that it creates a conflict between caregiver and patient.

Teach caregivers that conflict resolution does not always mean everybody is happy. Remind them that conflicts are resolved through compromise, a fact they may have forgotten under the strain of dealing with a terminal illness.

Stress to caregivers that the patient should make as many of his or her decisions as possible.

A good example of letting a patient make his or her own decisions is when adult children living some distance away from the patient want to move him or her into a nursing home. Although a move to a nursing home may make the adult children feel at ease, it may not be what the patient wants. If the patient understands the consequences of his or her decision to remain at home, including the absence of a caregiver at home, the children should accept the patient’s right to make that decision. Family members need to be told that taking away their loved one’s ability to make decisions can undermine his or her feelings of control, which can interfere with the person’s ability to deal with other aspects of his or her illness.

Spiritual concerns

Another source of conflict can be unmet spiritual needs. Patients are not always forthcoming about their questions of faith or place in the universe. Hospice workers are trained to get patients to express their spiritual needs, but often it is the caregiver who prompts the discussion that leads to the patient seeking a hospice chaplain or their own clergy.

The first step in meeting patients’ spiritual needs is training caregivers on what spirituality is, given its very broad definition. In some cases, the caregiver may be deeply religious, while the patient is not. Hospice workers need to train family caregivers about what spiritual care actually is, including that it does not necessarily involve religion.

Teach caregivers to share not just their faith with their loved ones, but their uncertainties, as well. This will help them understand their own relationship with those around them and a higher being, and they may reconnect with beliefs they held before their illness, Pitorak says.

Teach the caregiver that listening is the most important thing the caregiver can do to help, including letting the patient know that he or she is willing to discuss spiritual matters when the patient is ready. Help caregivers understand their limitations. If the caregiver finds it difficult to listen to the patient’s concerns, then the caregiver needs to be able to call the hospice chaplain or the patient’s own clergy to help the patient work through spiritual concerns.

Hospice workers need to be concerned about the spiritual needs of the caregiver, as well. Caring for a loved one who is dying often brings up very difficult issues, including questions about fairness, fear about the future, and other universal questions.

Just as the caregiver tries being available, so too should hospice workers. While this is not a new concept, Pitorak says it is easy to forget about the needs of the caregiver. And if the caregiver’s needs aren’t addressed, the caregiver will have difficulty helping the loved one sort through his or her spiritual concerns.