An Advance Care Plan covers:
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. See the section in this online resource collection for Health Care Agents for more details.
If you can, choose a backup agent also, in case your first choice isn't available in a medical emergency.
Special Considerations: Already Diagnosed With a Serious Illness
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.
Special Considerations: Dementia
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.
Likewise, try to find out your loved one's wishes, opinions, and preferences for the end of their life while they can still communicate clearly. Some key questions to consider are: artificial nutrition or hydration (feeding tubes, IV fluids, etc.); mechanical respirators or ventilators; whether to use CPR in later-stage dementia; and whether to request maximum pain medication even if it might hasten the dying process. A physician has to certify that someone is mentally competent to choose a DNR order, so if this is important to someone's wishes, it should be obtained before dementia is too far advanced.
Many older Americans are diagnosed with dementia towards the end of their lives (one estimate is 1 in 2 older adults have it at time of death), so it's wise to consider that possibility even though we might have no signs if impairment at the moment. This online tool walks users through that situation before it happens, to help plan ahead.
Special Considerations: Cognitive or Developmental Issues
People with cognitive deficits like Downs Syndrome 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:
Special Considerations: Children
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:
Do Not Resuscitate (DNR)
It's a good idea to consider whether we want emergency cardiopulmonary resuscitation (CPR) in an emergency situation when thinking about advance care planning. The National Institute on Aging explains that:
Cardiopulmonary resuscitation might restore your heartbeat if your heart stops or is in a life-threatening abnormal rhythm. It involves repeatedly pushing on the chest with force, while putting air into the lungs. This force has to be quite strong, and sometimes ribs are broken or a lung collapses. Electric shocks, known as defibrillation, and medicines might also be used as part of the process. The heart of a young, otherwise healthy person might resume beating normally after CPR. Often, CPR does not succeed in older adults who have multiple chronic illnesses or who are already frail.
In emergency situations - like when paramedics are called in or when someone's heart stops pumping in an ER - there is no time to research what that person has in their advance care directives. Instead, medical personnel are required to do everything possible to keep patients alive, even if those measures are against the patient's wishes. If we truly do not want CPR or other heroic measures, we need to have a Do Not Resuscitate (DNR) form posted in a very visible location so emergency personnel can find it quickly. DNR orders can be invoked while in hospital settings, or also at home (a non-hospital DNR), as the National Institute on Aging explains:
A DNR (do not resuscitate) order tells medical staff in a hospital or nursing facility that you do not want them to try to return your heart to a normal rhythm if it stops or is beating unsustainably using CPR or other life-support measures. Sometimes this document is referred to as a DNAR (do not attempt resuscitation) or an AND (allow natural death) order. Even though a living will might say CPR is not wanted, it is helpful to have a DNR order as part of your medical file if you go to a hospital. Posting a DNR next to your bed might avoid confusion in an emergency situation. Without a DNR order, medical staff will make every effort to restore your breathing and the normal rhythm of your heart.
A similar document, called a DNI (do not intubate) order, tells medical staff in a hospital or nursing facility that you do not want to be put on a breathing machine.
A non-hospital DNR order will alert emergency medical personnel to your wishes regarding measures to restore your heartbeat or breathing if you are not in the hospital.
DNR orders in California may apply to some or all of: CPR, ventilators or endotracheal intubation, defibrillation, or drugs that stimulate the heart. It is possible to have a DNR just for one of those procedures and not the rest. It's important to note that a DNR does not apply to any other life-sustaining treatments; emergency medical personnel will take all necessary steps to sustain life except the one(s) specifically rejected.
In California both the in-hospital and home (non-hospital) DNR forms must follow a specific format, and must be signed by both the patient (or their health care agent if they cannot do so for themselves) and by the patient's physician. The official form can be downloaded from:
At home, non-hospital DNR forms should be posted in a very visible and accessible place - on the back of the front door, on a refrigerator, on the bedroom wall, etc. It's also wise to have a copy that travels along with the person, in a wallet or purse. Medical alert bracelets or medallions are also legal in California to alert EMS personnel that someone has a DNR.
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