End-of-life conversations with patients and their families can be difficult, even for experienced health care professionals. Reluctance can sometimes push hospice conversations until very late in the disease course.
We don't have sure-fire answers for every end-of-life conversation. We have learned that clear discussions reduce fear and help patients receive the care they want.
Families tell us they are often relieved when healthcare providers ask them about their priorities. Patients may be reluctant to start the conversation, but they'll pour out their wishes and concerns to those willing to listen and ask questions.
The Serious Illness Conversation Guide from Ariadne Labs includes steps for setting up the conversation, patient-tested language and key topics.
To be honest, some families reject any mention of end-of-life care. Asking questions helps us understand their goals, too.
According to the daughter of a hospice patient, “It’s important for us to understand our options. No one knows what's going to happen or when. A little guidance can open the floodgates to conversations we're all having in our heads.”
Help patients understand the basics of hospice care
There are significant socio-economic and racial factors associated with a preference for dying at home. Studies suggest that a majority of patients with life-limiting illnesses prefer the option of dying at home, particularly those who are familiar with hospice care.
When patients or their families choose in-home hospice, they sometimes don't understand that family or friends may be devoting significant time caring for their loved one. This is where hospice teams can help explain the practical details about hospice, Medicare benefits, respite care and family support..
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 take care of 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.
Caregivers need their sleep
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.
It's OK to have some joy
Just because someone is nearing the end of life doesn’t mean that it's inappropriate to experience happiness. Hospice is not about dying, it's about living the fullest life possible, all the way to the end.
- Along the Final Journey (PDF, 830 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
We respect the relationship physicians have with their patients. Our goal is to work together to ensure patients and families receive the right care, at the right time.