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End-of-Life Conversations with Families: A Guide

shot of nurse holding patient's hands while discussing end of life conversations with familiesEnd-of-life conversations with patients and their families can be difficult, even for the most seasoned healthcare 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 end-of-life process.

The fact is that families are often relieved when healthcare providers ask them about their priorities. While they may be hesitant to start the conversation themselves, they appreciate the opportunity to share their wishes and concerns with those willing to listen and ask questions. Clear discussions reduce fear and help patients receive the right care at the right time.

Compassus is a full-service hospice care provider with locations nationwide and years of experience helping families have end-of-life conversations. To learn about our services, families can contact us at 833.380.9583 or fill out our convenient online form. 

How to Have an End-of-Life Conversation: Getting Started

How does one initiate a potentially difficult conversation about the end-of-life process? 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.

Here are some valuable tips: 

1. Lead Clear and Open Discussions

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: 

  • 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.

For those unfamiliar with in-home hospice care, questions typically arise. For example, will family or friends be devoting significant time to caring for their loved one? Fortunately, your hospice teams can help explain the practical details about hospice, Medicare benefits, respite care, and family support. 

People often find relief in the knowledge that hospice is not about a good death but about experiencing the best quality of life possible for as long as possible. 

2. Take Time to Adjust

Some families are used to having people in and out of their homes, 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.

3. 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 significantly 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.

Learn More About How to Talk to Someone About Hospice at Compassus

As a society, we find end-of-life conversations difficult for numerous reasons. At Compassus, we are dedicated to helping facilitate these important discussions so that patients and families can make informed decisions about care. Our team of passionate clinicians is committed to creating an individualized plan of care that honors the wishes of patients and families while keeping the patient comfortable, safe, and dignified. Contact us today at 833.380.9583 to learn more about our services and how we can help.