How Can I Talk About Wishes For Hospice With My Loved One?
Why Hospice Discussion Matters
Seeing a loved one at the end of their life is an incredibly difficult and saddening thing to watch unfold. While we all know that life does not go on forever, bearing witness at the end can be excruciating for family and friends. But as the end of the life cycle nears, a patient who’s in hospice has the opportunity to have their final wishes granted by their support system and medical staff.
Preparing Yourself for the Conversation About Final Matters
If you find yourself in a situation where a family member or friend is considering hospice care or is actively in hospice, there will be a hard conversation afoot. At some point, there will be discussions about medical preferences and what the patient does and does not want as a part of their care plan. As a trusted confidant, it’s important to be open to this conversation.
While it’s impossible to be prepared for end-of-life discussions, there are things you can do to be better equipped.
- Reflect- Understanding your own emotions and fears about hospice care is a priority. Showing up for the patient requires you to be open and non-judgmental of the process. When you can identify your own feelings on the matter, you will be less reactive to the patient’s wishes and less likely to project your own onto them.
- Collect Documents– When talking about hospice, many decisions need to be made and recorded for legal purposes. Medical forms such as DNRs, powers of attorney, HIPAA releases, or even a will may be necessary, given the time frame and medical diagnoses. Having these documents on record will make the later stages a smoother process when emotions are high.
- Choosing Time and Place- If you are the one initiating the conversion with the patient, timing is key. It’s a delicate dance to find the right time and manage their illness before it’s too late. Look for a period where they seem calm but alert. Be supportive, but ask whether they would like another person available for emotional support as well.
What Hospice Care Means
Hospice is end-of-life care that focuses on a patient’s physical, emotional, and spiritual needs. Hospice focuses on comfort and quality of life, and gives the patient a chance to meet death on their own terms. It’s commonly thought that hospice care is only for the patient, but support for the patient’s family is also a key part of hospice philosophy. Hospice offers services and resources to family members to help them with their grief. This could include counseling services, grief support groups, spiritual support, respite care, or home care coordination.
Starting the Conversation: Opening the Door
Opening the door to talking about hospice is unique for each patient and their family. If the patient is both physically and mentally able to have the conversations, it’s best to approach gently. Gauge their reaction to understand their readiness better, and proceed with caution. Everything doesn’t need to be ironed out in one conversation, but asking questions about their wishes may get the wheels turning.
If the patient is no longer responsive to talking about hospice themselves, consider having a family conversation. While more talking heads can often make decision-making more difficult, some family members may have relevant experience with hospice. Remember to keep the patient central to the conversation if they’re not able to speak for themselves.
Key Topics to Cover in Hospice Discussions
When you have a loved one who is nearing the end of their life, it’s likely tough to think clearly when emotions are high. Here are a few topics to cover in your hospice discussions:
- Location of Care- If conditions are optimal, where would the patient prefer to receive their hospice care? Home, a hospice facility, or in the hospital? Medical needs may interfere, so it’s important to be flexible but realistic.
- Comfort Care & Pain- When care planning, be honest about the symptoms they are currently experiencing or likely to experience as their condition progresses. Ask questions about how they want said symptoms treated. Ask the patient what other extras they would enjoy. Engaging their senses, like smell and sound, might be comforting for patients who are away from home or who can no longer speak.
- Religious or Cultural Wishes- Would the patient like to be greeted by a chaplain? Do they want to be added to prayer lists? Are there any cultural rituals that they would like done in their honor? Even those who were not particularly religious during their lives may have requests when faced with the end.
- Who Should Be Present- Who does the patient want around during their final days or during the final goodbye? If the patient has strained relationships with family members or loved ones, discuss their wishes on how they would like that to be handled.
- Funeral Arrangements- Do they have preferences on how their body is handled after they have passed? Are there special wishes for the final service? While these details should be filed formally, it’s still important to ask if there are any changes to previous plans.
Remember, these decisions don’t have to be made all in one day. If time allows, go slow and don’t overwhelm your loved ones.
Listening to Your Loved One
Arguably, there is no more difficult time of life than when faced with the death and dying process. When your loved ones are suffering, it’s hard to know what to say, so listening to them is the next best thing you can do. Be open, listen actively, and validate their emotions and final choices, even if their decisions don’t align with your own.
Documenting Care Preferences and Next Steps
When faced with hospice or palliative care, the end is near, so it’s important to put all the choices and care planning discussion on paper. If the patient is still able to speak for themselves, an advanced directive form is crucial. If there comes a point where they can no longer advocate for themselves, an advanced directive will outline their wishes for care. Between that and their living will, the medical staff and family members will have everything they need to carry out the patient’s final days on their behalf. At that point, all there is left to do is to keep in communication with he hospice staff, family, and loved ones while nature takes its course.