End-of-life conversations with patients and their families can be difficult, even for the most seasoned health care professionals. Fear of prognostic uncertainty, and the reception the topic will receive creates a feeling of reluctance. Unfortunately, this reluctance can sometimes delay hospice conversations until very late in the disease course.
However, families often tell us they are actually relieved when healthcare providers ask them about their priorities. While they may be hesitant to start the conversation themselves, they'll appreciate the opportunity to share their wishes and concerns to those willing to listen and ask questions. Clear discussions reduce fear and help patients receive the right care at the right time.
How do we get started? Though no two of these conversations are alike , the Serious Illness Conversation Guide from Ariadne Labs includes steps for setting up the conversation, patient-tested language and key topics. Even when families reject any mention of end-of-life care, asking questions helps us better understand their goals, too.
According to the daughter of a recent patient, “It’s important for us to understand our options. No one knows what's going to happen or when. A little guidance can have a domino effect on conversations we're already having in our own heads.”
Many people experience similar fears about dying: The fear of pain, fear of being a burden, fear of losing control, fear of dying alone. Healthcare professionals can diminish these fears and the taboo of death by listening, asking questions and encouraging families to share their concerns.
People often find relief in knowing that hospice is not about a good death, but about experiencing the best quality of life possible, for as long as possible.
For those who are not familiar with in-home hospice care, there can be questions that typically arise, for example: Will family or friends be devoting significant time caring for their loved one? Fortunately your hospice teams can help explain the practical details about hospice, Medicare benefits, respite care and family support. The following paragraphs explore a few more common topics that are frequently addressed.
Take time to adjust
Some families are used to having people in and out of their home, while others are unaccustomed to visitors. Meeting new nurses, social workers, home health aides, chaplains and volunteers can be overwhelming, especially in the first weeks of in-home hospice care.
Additionally, hospice professionals may order new equipment and supplies to help provide care for the hospice patient. This can be quite a change for families. It's important for the caregivers and family to understand that it will become easier after a couple of weeks when family members get to know the hospice staff.
Encourage caregivers to care for themselves
While caregivers are busy taking care of others, it is important that they take care of themselves as well. But doing this is often easier said than done, especially when someone is as busy as caregivers tend to be.
Advise caretakers that they can benefit greatly from small breaks, such as taking a long bath, phoning a friend, working in the garden or taking a walk. Some caregivers may prefer to stick close to home. In this case, suggest they use a two-way home monitor. Even help devise a schedule among family members willing to help, even if it is for only a few hours on the weekend.
Many caregivers say they don't get enough sleep. If a caregiver is up several times at night to give medicines or care, they should talk to their hospice nurse. If the caregiver isn’t sleeping well, chances are the hospice patient isn’t either. It’s possible to update the plan, including an option for respite care.
- Along the Final Journey (PDF, 630 KB) - A caregiver guide from Compassus
- The Conversation Project, including starter kits in multiple languages.
- Clinical Practice Guidelines for Quality Palliative Care
- Examples for meaningful hospice discussions
Reviewed by Benjamin Getter, D.O., February, 2022