If you were called upon to make a critical medical decision for someone you love who is close to death, would you be confident that the decision you make would be aligned with their end-of-life wishes and values? In other words, would you be able to confidently choose between an aggressive life-sustaining intervention or palliative care that’s focused on comfort?
If you haven’t had a serious face-to-face discussion with a relative or friend who may one day depend on you to make such a decision, it’s about time you did—even if you think you already know what they want.
A study published in November 2018 in JAMA Internal Medicine indicates that designated health care decision makers believe they know the end-of-life medical wishes of their loved ones—whiletheir loved ones believe they’ve made their wishes clear to their surrogates. Often, both are wrong about the other’s preferences—and those mistaken assumptions are why neither surrogates nor loved ones feel the need to sit down and have an honest conversation about end-of-life care.
The study was made up of 349 patients ages 55 and older receiving primary care at the VA Connecticut Healthcare System and the person, or surrogate, whom they expected to make their health care decisions if they no longer had the capacity to do so. Researchers from the Yale School of Medicine asked the veterans’ health care surrogates—usually a spouse or an adult child—to consider a situation in which they had to make a medical decision on behalf of their loved one if they couldn’t speak for themselves in the face of a serious illness.
How confident, asked the researchers, would they be in making a life-sustaining treatment choice that might leave the patient with a severe physical or cognitive disability or severe pain every day?
Seventy-five percent of surrogates rated themselves as extremely confident that they knew their loved one’s wishes. However, when the wishes of patients and their surrogates were compared, only 21 percent of surrogates had correctly predicted the patient’s wishes.
As the study shows, there’s a high likelihood that second-guessing the medical wishes of someone close to you won’t result in an outcome that the person wanted. That’s why it’s important to start an end-of-life conversation now.
Planning in advance
A serious talk about death isn’t an easy conversation to have. But advance planning will allow your loved one to clarify their wishes in a way that casual conversation can’t. While it’s imperative that someone with a life-limiting illness communicate their wishes, the best time to have the conversation is long before care is needed.
If you find it difficult to engage with someone in such a conversation, you can enlist their doctor to facilitate it. Doctors can counsel their patients on issues such as advance care planning and hospice care. Medicare and some private insurers will pay for the session.
Medicare and Advance Care Planning
If you’re 65 or older and have been enrolled in Medicare Part B for more than 12 months, you’re entitled to a yearly wellness visit that covers advance care planning at no charge. Here's how it works.
Being ill-prepared to advocate for a sick loved one can be daunting. Studies have shown that surrogates often experience stress and depression when making tough health care decisions. But studies also show that involving surrogates can ease their burden and increase their satisfaction that the patient’s wishes have been carried out.
Health care proxies
The planning process typically involves completing two types of legal documents, sometimes referred to alone or together as an advance directive: a health care proxy (also called a durable power of attorneyfor health care) and a living will.
A health care proxy authorizes the surrogate to make medical and end-of-life decisions on behalf of their loved one if the loved one becomes incapacitated. The surrogate is also referred to as the health care proxy.
Although many internet sources offer generic health care proxy forms, laws vary by state, so it’s best to use a state-specific form. You can download state forms from the National Hospice and Palliative Care Organization at CaringInfo.org, or you can go to your state’s health department website, which should also have them.
The form is signed by the person designating a surrogate and the surrogate, as well as at least one witness; some states require that it be notarized. A lawyer typically isn’t needed for the paperwork unless a case is unusually complex.
If you’re a health care proxy, you have legal access to the medical records of your loved one, and their medical team is authorized to share with you medical information that’s otherwise protected by privacy laws. You may be asked to make decisions for them, such as whether to consent to tests, surgical procedures, or transfers to another facility. You have the right to ask for a second opinion or to have the patient transferred to another facility or placed under another doctor’s care.
If your loved one has made their wishes clear on the proxy form or in a separate document such as a living will or an advance directive, as health care proxy you’re required to make decisions in accordance with those wishes.
If a patient hasn’t named a proxy, the state will assign their next of kin to make decisions, which typically starts with the spouse (and, in some jurisdictions, a domestic partner) and then adult children, parents, siblings, and other relatives.
A living will documents a person’s wishes for life-sustaining treatment and resuscitation. A living will goes into effect only when a person is terminally ill with no reasonable expectation of recovery and lacks the capacity to make their own decisions. In some states, the health care proxy and the living will are combined into one document; names of the forms vary among states.
Some people prefer to be kept alive on life support for as long as possible, while some prefer a more natural death focused on comfort without being hooked up to machines. For others, the choice lies somewhere in the middle. The living will can help clarify their wishes regarding life-prolonging measures such as the use of breathing tubes and ventilators, cardiopulmonary resuscitation (CPR), and feeding tubes. It can also include directions about the use of pain control, dialysis, implantable defibrillators, and more.
Helpful End-Of-Life Planning Resources
These free online resources can guide you and your family in discussing and making decisions about end-of-life care.
The experience of resuscitation can be traumatic and painful. If a dying person does not want to have CPR performed in an attempt to prolong their life, their doctor writes a do-not-resuscitate (DNR) order that instructs health care providers to withhold CPR if the patient’s breathing or heart stops. The doctor prepares the document after a discussion with the patient and their health care proxy or family and enters the DNR order into the patient’s medical chart.
The patient can carry a wallet card or wear a bracelet or necklace indicating the instructions not to be resuscitated. Anyone with a DNR order can change their mind at any time and cancel it.
Safekeeping of documents
Once an advance directive is signed, both parties should each keep a copy in a secure but accessible place. It can also be digitally stored and added to online medical records in a patient portal. Patients should also give their primary care doctor a copy to file or enter into their electronic health record.
Copies can also be distributed to family members, friends, clergy, and any other health care providers who may be involved in their care.
To keep the documents up to date, they should be reexamined every two years or so and signed and dated again. Every five years, they should be signed again in front of witnesses. An individual can revise or revoke their directive at any time by simply informing their doctor or nurse, as well as their health care proxy.
One of the greatest benefits of preparing these documents is the frank discussion it encourages. As a health care proxy with clear instructions, you’ll be able to safeguard your loved one’s dignity and their right to live or die in a manner befitting their personal values.
This article first appeared in the May 2019 issue of UC Berkeley Health After 50.
Published May 22, 2019