While there can be several forms involved in advance care planning (POLST form, organ donations, etc.), 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.
But 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:
Perhaps most importantly, consider choosing a health care agent, health care proxy, or substitute decision-maker (these are different names for the same role).
Health care agents may find these helpful:
The resources below link to helpful information for health care agents, in several different languages besides English. While the Australian regulations and organizations it mentions may not apply to the U.S., the personal considerations are universal.
Please note that in CA - as opposed to in other states - when you cannot make decisions for yourself or express your preference about your medical care, your spouse's wishes do not automatically take priority over other family members'. Instead, your health care team has to try to balance the wishes of all family members present. The potential for conflict makes it even more important to decide upon a health care agent.
You can choose your spouse as your health care agent, of course, or you can choose someone else if you feel that your spouse might find it hard to make unemotional decisions in such a difficult time.
If someone has memory loss, cognitive impairment, dementia or Alzheimer's, care planning conversations become more difficult. It is best to settle future financial and legal matters in advance (ideally, as soon after diagnosis as possible) while there is less doubt about 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 are terminal, their parents can get some support from these conversation starter kits:
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