Starting a conversation about hospice and other end-of-life care preferences with loved ones may feel uncomfortable, but knowing how someone wants to die, how much medical intervention they want, and where they want to die is important. Learn more about hospice and palliative care here. Knowing these things and more can help ensure that a person’s wishes are met. It critical to learn about care options and communicate preferences about care with medical professionals before significant physical or cognitive impairment prevents a person from making their own decisions. And it is better to be proactive than to wait for a doctor or nurse practitioner to provide direction. Unknown care goals, for example, can delay access to hospice care, resulting in hospice care beginning when someone is just days or hours from death. This scenario happens far too often in the United States. Misconceptions about hospice care are well-documented and prevent open discussion among patients, families, and medical professionals. The result is unwanted, unsuccessful care and hospitalizations instead of months of hospice care that could have provided symptom management to the patient, time for reminiscence, support for family, and death at home, which is where most Americans want to die. Learn about the myths and truths of hospice care here. To help start the conversation, HFA provides a list of questions below that can help guide a productive discussion and inform care choices and decisions about care.
Documenting the conversation
Documenting care preferences is also important, and states have varied laws about how care goals and preferences must be documented. Some people may find it easier to record their preferences and share them with family or friends in a living will, 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, with the goal of it being available when needed. It is also important that a healthcare provider, family member, or healthcare decision maker knows about the document and how to access it. Learn more about documenting care preferences here.
A person’s personal and cultural history, including their faith beliefs, may influence care decisions and multiple conversations may need to occur during a person’s lifetime or illness. Priorities, circumstances, and health status may change. As with any major decision, it is best to make these decisions and have these discussions when a health crisis is not occurring, but even if it does not seem like the ideal time, it is better to have a gentle conversation if possible. Changes to both oral and written care goals can be made as long as someone is competent and can communicate.
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