1. Establish the Medical Facts
To avoid mixed messages from medical professionals, coordinate with other providers to gain consensus about the hospice choice. You do not need to rely on the opinion of one person.
2. Set the Stage
Choose a comfortable time and setting for an uninterrupted conversation. It is optimal if key decision makers in the family are present.
3. Assess Understanding of the Prognosis
Begin by asking your loved one about his/her understanding of the disease, its severity, and what the likely outcome is to be. This is a time to observe any misunderstandings or denial on the part of your loved one and other family members.
4. Help Your Loved One Define Her/His Goals for the Unforeseeable Future
These goals can be treatment goals and can determine whether the focus is curative or palliative. Beyond treatment goals, however, it is imperative to talk about hopes and fears. Understanding what your loved one hopes to achieve in the near future – even non-medical goals such as attending a family event or seeing a sibling one last time – can provide hope and personal empowerment even in the face of an incurable condition. Similarly, understanding what she/he hopes to avoid – uncontrolled pain, dying in the hospital – can help maximize your loved one and family’s unique definition of quality of life.
5. Reframe Those Goals, as Needed, to Align with the Realities of the Prognosis
If your loved one or family’s goals are unrealistic, a realignment process can be initiated with compassion by using “wish statements” (e.g., “I wish I could say that we will be able to…but we can’t. What we can do is…”). It may take time for the family to adjust emotionally to this news. Having this conversation sooner rather than later will provide maximum opportunity for the family to regroup and be empowered to come up with their own achievable goals, be they medical or personal. It is easier to let go of curative care if there are other hopes to focus on. The hospice option is most appropriately brought up once your loved one and family treatment goals are consistent with a palliative approach.
6. Identify Care/Service Needs for Your Loved One and Family Members
Because many people erroneously associate hospice with giving up or imminent death, acceptance of the service can be facilitated by first identifying the patient’s symptoms in need of palliation (pain, constipation, fatigue, sadness, anxiety, etc.). Next, looking more at the day-to-day realities of living with a serious condition, identify assistance needs such as weekly home visits to address changing symptoms, emotional or spiritual support, a home health aide to bathe and groom your loved one, advice concerning financial or other community programs available are all things to consider.
7. Introduce Hospice as a Service That Supports Goals and Addresses Care Needs
Once the palliative needs and desired services are identified, hospice can be introduced as a program that is free – or very low cost – and designed specifically to address your loved one and family’s care and service needs.
8. Respond to Emotions and Concerns
Acknowledge feelings and addressing concerns is paramount before eventually making the official recommendation of hospice. Asking about any past experience or concerns about hospice offers an opportunity to dispel myths and reassert the physician’s continued participation in care.
9. Make a Hospice Referral
An initial enrollment visit can be scheduled, or an “information only” visit can be had.
10. Remember That Sadness and Hope Can Coexist
For your loved one to accept hospice there might be some sadness and that is expected and nothing to fear. But, there can also be hope. Hope that she/he will be in less pain, sleep better, eat better, and live life to the fullest for however long that may be.