There can be several forms involved in advance care planning (POLST form, organ donations, etc.), but there is no one right way to make an advance care plan. Instead, focus on what matters to you (or your loved one), right now. The plans we make for ourselves at age 40 can be very different than what we want at age 85, and should be. And major life events like a new child, moving away, or important relationship changes should remind us to update our advance care plans.
These fairly comprehensive toolkits and guides can be helpful, in figuring out where to start:
It is a good idea (but not essential) to consider the kinds of medical procedures used to prolong life, and to decide whether we want them - or want them only if chances are good for an acceptable quality of life afterwards. There are links to information on comfort care, palliative care, and hospice (including at-home care) in the section of this guide on Options at the End of Life. Other specific details that might be important are:
Fact sheets in Chinese, Spanish, and Vietnamese on artificial hydration or tube feeding, breathing machines, and CPR can be found on this website:
Despite the best planning, we can't imagine all the possible things that could happen - and even if we did, we might not be able to communicate our wishes when the time comes. Your plan should include choosing someone who can an speak for you if you cannot. This person is called your health care agent, health care proxy, or substitute decision maker (these terms all refer to the same role). You need to also talk with them about your priorities and wishes, so they can make the best decision for you, based on what you want.
If you can, choose a backup agent also, in case your first choice isn't available in a medical emergency.
If someone has memory loss, cognitive impairment, dementia or Alzheimer's, care planning conversations become more difficult. If at all possible, it is wise to settle future financial and legal matters in advance (ideally, as soon after diagnosis as possible) while there is less doubt about their competence to make those decisions.
People with cognitive deficits can be actively involved in creating their own Advance Care Plan. These workbooks and videos were developed by several agencies in cooperation with the Coalition for Compassionate Care in California:
When a serious illness has already been diagnosed, medical decisions can be more detailed (and can get more complex).
This guide from the American Society of Clinical Oncologists explains options like clinical trials and palliative care, and how they might impact your advance care plans. Although this is written for cancer patients, the points it raises are relevant to other serious diseases.
In cases of severe mental illness, a Psychiatric Advance Care Directive performs similar services for people whose illness might, at times, disqualify them from making informed decisions about their mental or physical health care. It can cover issues like psychiatric medications and/or hospitalization for a psychological crisis.
Although it is heartbreaking to consider these questions for children who have a terminal condition, their parents can get some support from these conversation starter kits:
Be sure to discuss information gathered from these resources with your health care providers to see if it is relevant to your individual situation. Health and medical information accessed through these websites is not intended to substitute for or to replace the advice or instruction of a health care professional.
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