Although talking about hospice and end-of life options may feel uncomfortable, it is vital to have this important conversation with your loved ones.
When you know their preferences for medical intervention and where they want to be when they die, you can ensure that their wishes are met.
Discuss options early
Most Americans want to die at home, so understanding the options for end-of-life care is critical.
Talk with your loved one before significant physical or cognitive impairment keeps them from making their own decisions — and tell their physician and other medical professionals about their choices for end-of-life care.
Hospice care can begin months before your loved one’s last days, providing symptom management, time to reminiscence, support for family members, and a death at home.
Far too often, families are unclear about their loved one’s end-of-life preferences and goals. This can delay the start of hospice care until the patient is just days or hours from dying.
Starting the conversation early can prevent your loved one from experiencing unwanted, unsuccessful care and hospitalizations.
Remember that your loved one’s personal and cultural history, including their faith beliefs, may influence care decisions. More conversations may be needed as their health status, priorities, and circumstances change.
Learn the facts about hospice care.
Talk with medical professionals
It is important to be proactive about talking with medical providers. Don’t wait for a doctor, nurse practitioner, or physician assistant to bring up the topic of end-of-life care.
Ask healthcare professionals to speak frankly about the prognosis and options for care. They should be willing to share information and provide a referral to hospice or palliative care if it is appropriate and desired.
For patients with Medicare, discussing and documenting care preferences with a physician is a covered benefit.
Questions to think about
These questions can prompt a productive discussion about end-of-life care:
- What do you value most about your life?
- If you were diagnosed with an illness that could not be cured, would you want to pursue every possible treatment, even those that diminished your quality of life? Would you want to stop curative efforts if they were unsuccessful?
- If you were unable to eat or drink because of a terminal illness, would you want artificial nutrition (often called tube feeding) and hydration (intravenous fluids) even if they might not help you live longer?
- Understanding that cardiopulmonary resuscitation (CPR) could result in broken bones and other medical problems, would you want CPR if you were dying from an illness and were extremely frail?
- How do you feel about a lengthy hospitalization or extended time in a nursing home?
- Do you want to die at home? Who do you want near you when you are dying?
- How much pain is acceptable to you? Would you want to be pain-free even if it meant trading comfort for wakefulness or alertness?
- What decisions about your care do you want to entrust to others, and who would you designate to make those decisions? Have you shared your care preferences with that person and taken steps to ensure they are recognized as a healthcare proxy (also known as a medical power of attorney), substitute decision maker, or spokesperson?
- Do you want a funeral or memorial service? If so, what music would you want? Who would you want to speak? Are there religious passages, poems, or other readings that would be meaningful to you?
- Do you want an obituary? Does someone have the information needed to compose it?
- Do you want your body to be buried, cremated, or donated to science?
- If you have organs or tissue that could be donated to help others, or to advance science, do you want to donate them? Have you made those wishes known?
Document the conversation
Talking about end-of life wishes and making note of preferences is called advance care planning. Documenting the conversation is an important step, because states have different laws about how care goals and preferences must be recorded.
Some people may find it easiest to write down their preferences and share them with family or friends in a living will, a signed and dated letter, an advance care directive, or even an email, rather than discussing them in person.
Some states, healthcare systems, and companies that specialize in end-of-life planning store this information so it is available when needed. It is important that a healthcare provider, family member, or healthcare decision maker knows about the document and how to access it.
As with any major decision, it is best to have these discussions and make these decisions before a health crisis occurs.
Even if now does not seem like the ideal time, it is better to have a gentle conversation if possible. Individuals can make changes to both oral and written care goals so long as they are competent and can communicate.
Read more about advance care planning.
