Advance Care Planning

April 5, 2024Marti Lythgoe

doctor talking with elderly couple When my father passed away from aspirational pneumonia at age 97, we were able to let him go peacefully, without hospitalization or any medication other than for comfort care. This is because we had a POLST (Physician Orders for Life-Sustaining Treatment) agreement, previously signed by him, me, and his physician specifying that those were his wishes. Dad had endured hospitalization for aspirational pneumonia and the rehab that followed it seven times. His doctor knew that it would reoccur and most likely be his cause of death. Dad had no desire to go through all of that again.

We were fortunate to know that without a POLST, Dad’s assisted living facility would have to call EMTs who would take him to the hospital, even if he had a living will that specified otherwise. EMTs cannot follow advance care plan forms, including a DNR (Do Not Resuscitate), in emergency situations because they are not signed by a physician. However, they can follow orders on a POLST form because a POLST is a doctor’s order and is valid anywhere, similar to a prescription. POLST forms can be beneficial for people who are or could become seriously ill and who don’t want to go through specified medical treatments.

Never too Early to Make Plans

Advance care planning is important for any person over 18. Any of us could face a life-threatening illness or accident that makes us unable to answer questions about our medical treatment. If we haven’t discussed our wishes with family members and made them legally recognized, they might incorrectly make end-of-life decisions for us. Knowing your wishes may also help your loved ones feel less burden and stress because important decisions about your care have already been made. If a person can no longer communicate his or her wishes, it is too late to complete an advance care plan. If you do not have an advance directive and you are unable to make decisions on your own, the state laws where you live will determine who may make medical decisions on your behalf.

When my husband was first diagnosed with both Alzheimer’s and vascular dementia, he told me and our children that he hoped he could die quickly of something else, rather than live for years unable to recognize us or care for himself. After eight years of slowly losing cognitive functions, a stroke more quickly took away his self-care abilities, and when vascular limitations put a strain on his heart, we were told he likely wouldn’t live much longer. Although sad to lose him, we were happy to know he could have his wish, and at that point we refused all life sustaining care for him. After all his children were able to come and tell him goodbye, he passed away peacefully in his sleep.

Advance Care Planning Options & Directives

Having meaningful conversations with your loved ones is the first and most important step in advance care planning. It’s also wise to have your preferences in writing by completing legal documents called advance directives. You can find the Utah documents you need on this website by clicking here. They provide instructions for medical care and only go into effect if you cannot communicate your own wishes. It’s wise to have your documents signed by a Notary Public.

Think of your advance directives as living documents that you review at least once each year and update if a major life event occurs such as retirement, moving out of state, or a significant change in your health. A lawyer can help but is not required to prepare an advance directive. The two most common advance directives for health care are the living will and the durable power of attorney for health care.

Living will: Tells doctors how you want to be treated if you cannot make your own decisions in an emergency health situation. You can specify which medical treatments or care you want, which ones you want to avoid, and under which conditions each of your choices applies. Learn more about preparing a living will.
Durable power of attorney for health care: Names your health care proxy, a person who can make health care decisions for you if you are unable to communicate these yourself. Having a health care proxy helps you plan for situations that cannot be foreseen, such as a serious car accident or stroke.

Other Advance Care Planning Forms & Orders

You can prepare documents to express your wishes about a single medical issue or something else not already covered in your advance directives, such as an emergency. For these types of situations, talk with a doctor about establishing the following orders:

Do not resuscitate (DNR) order: Becomes part of your medical chart to inform medical staff in a hospital or nursing facility that you do not want CPR or other life-support measures to be attempted if your heartbeat and breathing stop. Posting a DNR next to your hospital bed can avoid confusion in an emergency. Without a DNR order, medical staff will make every effort to restore breathing and the normal heart rhythm.
Do not intubate (DNI) order: Informs medical staff in a hospital or nursing facility that you do not want to be on a ventilator.
Do not hospitalize (DNH) order: Indicates to care providers that you prefer not to be sent to a hospital for treatment at the end of life.
Out-of-hospital DNR order: Alerts emergency medical personnel to your wishes if you are not in a hospital.
Physician orders for life-sustaining treatment (POLST) and medical orders for life-sustaining treatment (MOLST) forms: Provide guidance about your medical care that health care professionals can act on immediately in an emergency. (See first paragraph above.)

You may also want to document your wishes about organ and tissue donation and brain donation. Learning about care options such as palliative care and hospice care also can help you plan ahead.

To get started with advance care planning:

Reflect on your values and wishes.
Talk with your doctor about advance directives. Advance care planning is covered by Medicare as part of your annual wellness visit. If you have private health insurance, check with your insurance provider. Talking to a health care provider can help you learn about your current health and the kinds of decisions that are likely to come up.
Choose someone you trust to make medical decisions for you. Once you’ve decided, frequently discuss your values and preferences with them.
Complete your advance directive forms. To make your care and treatment decisions official, you can complete a living will. Once you decide on your health care proxy, you can make it official by completing a durable power of attorney for health care.
If you are a veteran, contact your local Veteran’s Affairs (VA) office. The VA offers an advance directive specifically for veterans.
Share your forms with your health care proxy, doctors, and loved ones. After you’ve completed your advance directives, make copies and store them in a safe place. Give copies to your health care proxy, health care providers, and lawyer.
Keep the conversation going. Continue to talk about your wishes and update your forms at least once each year or after major life changes.

Will an advance directive guarantee your wishes are followed?

An advance directive is legally recognized but not legally binding. This means that your health care provider and proxy will do their best to respect your advance directives, but there may be circumstances in which they cannot follow your wishes exactly. For example, you may be in a complex medical situation where it is unclear what you would want. This is another key reason why having conversations about your preferences is so important. Talking with your loved ones ahead of time may help them better navigate unanticipated issues.

Long Term Care Insurance

Most of us will reach a point in our lives where we can no longer care for ourselves. Dementia, chronic illness, or an injury may result in the need for long-term care (LTC). With some exceptions, LTC insurance pays for health-care costs not covered by regular health insurance or Medicare, such as in-home, assisted-living facility and nursing-home care. The cost of this care can be very expensive, and LTC insurance can help defray some of these costs. However, because the cost of LTC insurance is also very expensive, and there are no regulations on providers raising the cost of an already-purchased policy, the decision to prepare for your future healthcare needs in this way can be a difficult one.

Everyone’s situation is different. Usually, the person most in need of this type of insurance is someone who is too wealthy to qualify for Medicaid and too poor to self-insure for this expense. There are many factors that weigh in the decision and also other options for covering care. Consider consulting a fee-only financial planner, who can take into account different scenarios to help you explore your options. You can find a planner in your area on the website of the National Association of Personal Financial Advisors. Several online sources also can help you decided whether or not LTC insurance is a good idea for you &/or your spouse. Google “Long Term Care Insurance Pros and Cons.”

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