Caregiver Guide: Advance Directives

Understanding the Problem

Sometimes, decisions about medical treatments must be made when the older person is too sick or is unable to express his or her own wishes. A serious illness or even medicines used to treat an illness can cloud thinking or make it impossible for a person to make decisions for him or herself. This inability to make one's own decisions could also happen with Alzheimer's disease, after surgery, and during a terminal illness, coma, or stroke. When this happens, you may be asked to work with doctors to make decisions that the older person would want if he or she could speak for themselves. Making medical decisions for someone else can be difficult. Family members may disagree with one another or with the doctor. They may not understand the older person's condition, or they might not be sure what the person would want.

Forms called “advance directives” can make it easier for family and friends to make medical decisions when the person who is ill can no longer do so. The forms also help the healthcare providers recommend treatments that match the person's wishes.

Older adults should consider 2 types of advance directives:

A living will

Living wills are types of advance directives that are also legal documents.  They allow people to state what they would want done medically in the case of a serious or terminal illness, such as in the event of a coma or stroke.

A health-care proxy

A health-care proxy  (also called "durable power of attorney for health care”) allows people to choose someone else to make decisions for them if they are unable to do so themselves.

These documents can make it easier for family and friends to make medical decisions when the person who is ill can no longer do so. The forms also help healthcare providers recommend treatments that match the person's wishes.

Many caregivers have said that these documents helped them a great deal when treatment decisions needed to be made. They also help older people feel confident that future medical decisions will be based on their wishes. In addition, they can help caregivers represent the patient's interests when discussing health care decisions with healthcare providers while minimizing anxiety and stress associated with emotionally difficult decisions.

Your goals are to:

  • Help the older person to think about planning for future medical decisions
  • Learn the values and care goals of the older person
  • Learn what will be required of you if the older person can't make his or her own medical decisions
  • Encourage the older adult to discuss his or her values and general treatment preferences with family, friends, and healthcare providers and fill out advance directive forms
Click on each of the topics below to read more. 

When To Get Professional Help

Talking to a healthcare provider

You should encourage the older person to have a discussion with a healthcare provider about planning for how decisions will be made for life-threatening illnesses.  Here are some good reasons why.

  • The healthcare provider can give important information about the types of illnesses (such as Alzheimer’s) that make people unable to speak for themselves. They can also explain the types of treatments that are sometimes used to prolong life, and how well the treatments work. They can also give some sense of the usual disease course and life expectancy for the conditions the older person has.
  • The older person can give the provider important information about his or her own goals for future medical care.
  • The healthcare provider will then know, first hand, what the older person’s wishes are. This will help them (and caregivers) to document and carry out those wishes.

Here are some of the things that the older person should ask the healthcare provider

  • What is my health like now and what should I expect my health to be like in the future?
  • How do you decide when to use life-prolonging treatments when patients like me have a serious medical illness?
  • How are decisions made if I am not able to express my own preferences?

Here are some things the older person should tell the healthcare provider

  • Concerning situations. For example, people often are concerned about not being able to think clearly, about suffering pain, about being a burden on their families, about needing others to take care of them, and about financial costs.
  • Situations that would be so bad that the older person would not want any medical treatments to prolong life. The older person should talk about what it is about these situations that causes these feelings.
Here are some important things that the older person should know about advance directives:
  • You don’t need to see a lawyer to fill out advance directives. Lawyers can answer questions about how advance directives should work and how they will be interpreted by the courts in your state. Lawyers can give you forms or they can develop forms for your special needs. However, you do not have to use a lawyer to make an advance directive.
  • Many healthcare providers have copies of advance directive forms or know where they can be found.
  • Social workers and nurses can often help with advance directives.

What You Can Do To Help

The most important thing you can do is to encourage the older person to choose someone to make medical decisions.

You should encourage the older person to choose someone to make medical decisions if in the future they are unable to do so. This person is called a “proxy,” which means someone who has the authority to act for another person. (Other terms that refer to the same role include “health care proxy,” “health care agent,” or “durable power of attorney for health care”.)

Most older people select a family member or a close friend as a proxy. The proxy should be someone the older person trusts to make the right decision or choices. Along with choosing this proxy, the older person needs to discuss their wishes about end of life care with the proxy and other family members, if appropriate. Some states require a “durable power of attorney” form in choosing a health care proxy. The state forms will have instructions that explain what is required in your state, or a social worker or lawyer can assist you.

The older person should think about what kind of person he or she wants to make these decisions in his or her place. People give many reasons for their choice of proxy. Here are some examples of what kinds of things people want from a proxy:

  • My proxy will follow my instructions – will do what I want, not what they want.
  • My proxy knows me best and knows what treatments I would want for myself.
  • I trust my proxy to make good decisions for me.
  • My proxy is level-headed and won’t let emotions get in the way of making decisions.
  • My proxy cares about me more than anyone else does.

The person who will be the proxy should talk with the older person concerning their feelings about life, illness, and death.

If possible, the older person’s healthcare provider can be included in the discussions.  If this is not possible, the same issues should be discussed with the healthcare provider separately. The more the proxy and the healthcare provider talk, the more they will both understand what the older person would want.

They should discuss questions like the following:

  • Would the older person want to receive artificial nutrition at the end of life?  (That is, food and water pumped into the body through a tube inserted either down the nose or directly into the stomach.)
  • Would the older person want to be on a respirator (breathing machine) even if they are in a permanent coma or unlikely to recover?

It is through discussions like these that the patient, the proxy, and the healthcare provider can be confident that medical care will be appropriate and based on the older person’s own values.

Issues that should be included in discussions

  • Find out what illness or permanent disability would be unacceptable to the older person.  These may include paralysis, no longer recognizing family, very painful treatments or illnesses, and being kept alive for a prolonged period by a respirator.
  • Discuss the care of a terminal illness with the older person. Would they want any medical treatments to prolong life or only medicines to help them remain comfortable? Why does the older person feel this way?
  • What is important when the person is sick? For example, is comfort very important, or is being conscious, or being in control important to them? Do these feelings depend on what is likely to happen next?  For example, consider someone who is dying but can take a difficult treatment that might extend life.  Does it make a difference if the treatment leads to a few weeks or months more of life, compared to years more?
  • What medical treatments would not be wanted under any circumstances, even if the treatments were used only temporarily?
  • What medical treatments are acceptable on a temporary basis to help recover from an illness but would not be acceptable permanently?

Helping the person fill out a living will (advance directive)

Another way to help is by helping the older person fill out a living will. A living will states a person’s wishes about medical care if they are close to death or too ill to make decisions. A living will also often allows a person to name a proxy. A copy of the living will should go to the proxy and the healthcare provider. It should also be included in the medical record if the older person is admitted to a hospital or skilled nursing facility. This informs health care staff what the patient’s wishes are if they can’t speak. Under the Patient Self-Determination Act, patients or their representatives will be asked if they have a living will on admission to a health care facility or when joining an HMO.

Each state has its own forms for living wills and rules for filling them out. Free forms are available from doctors and hospitals, local medical societies, bar associations, health insurers, and public service organizations. A healthcare provider can give you a standard form or tell you where to get one. The patient is free to change a living will at any time.

Physician Orders for Life-Sustaining Treatment (POLST) is a recently developed program that is designed to improve the quality of care people receive at the end of life.  It effectively communicates medical orders and patient wishes on a brightly colored form that can be transferred from one care setting to another and that healthcare professionals have promised to honor. Visit the POLST website to find more information and to locate community or state-based POLST programs.

Carrying Out Your Plan

Problems you might have carrying out your plans

"My mother doesn't want to talk about future health care decisions."

Discussing advance directives is not a pleasant topic for many people. Some people find these discussions very upsetting. Others feel they will never be in a situation where another person will have to make decisions for them. You may want to start by talking about someone else who has recently died or has been hospitalized. You can use the example to show how important it is to have an advance directive. However, don't assume that the older person doesn't want to talk about these issues. They may be thinking about it already, and may be glad to have you bring up the subject.

"I don't feel comfortable being a proxy."

Being a proxy is a serious responsibility and so your feelings are understandable. But someone has to do it and the older person thinks you would be the best person. What is it about being a proxy that makes you uncomfortable? Talk with the older person or someone who can understand your feelings. They may be able to help you decide if you can take on this responsibility. If you decide that you cannot, then help the older person to find someone who can—and then be sure that person is willing to take on the responsibility.

"My husband did not do any advance planning and now it's too late since he's in a coma and can't speak for himself."

Even if your husband did not write a living will or formally designate a person to be his proxy, his healthcare providers can make medical decisions in consultation with you and others who know him. The healthcare providers need to know what your husband would say if he could speak for himself. You can tell them what you think he would want done and why.

"My father is sick and I'm his proxy. I'm worried that I will have trouble talking to his doctors."

Open communication is very important. To make good decisions, you and his healthcare providers should work together as a team.  They will give you information and make recommendations. Your job is to say what you think your father would want.

Doctors and other hospital staff are there to help you and the patient. If you feel intimidated by a doctor, ask a nurse or social worker to speak to the doctor for you or with you. Or you can go over your questions with someone from the hospital staff before you talk to the doctor. If, for some reason, you believe that the healthcare providers are not doing what your father would want, you can speak with a patient advocate. Most hospitals have a patient advocate, patient representative, or “ombudsman” who investigates complaints made by or on behalf of patients and who will work to resolve the problems.

Think of other problems you might have carrying out your plan

What other problems could get in the way of doing the things suggested in this presentation? For example, will the older person cooperate? Will other people help? Will some family members disagree with what the older person wants? How will you explain your needs to other people? Do you have the time and energy to carry out this plan? You need to make plans for solving these problems.

Checking on Progress

Unfortunately, it is easy to delay this task. Most people don’t want to think about this subject, but when the time comes to make difficult medical decisions, most people wish they had planned well in advance. Having a signed statement from the older person and discussions with them about their wishes ahead of time may increase your ability to effectively represent their interests when communicating with healthcare providers about health care decisions.

Set a goal of discussing and having a signed advance directive by a certain date.  Not just for the older person, but for yourself as well. You can ask a lawyer or social worker for help in getting the right forms for your state. Talk to the older person about their wishes and encourage filling out the form. If the older person is unable or unwilling to complete the form, then try to learn what they would want done so that you can tell this to the healthcare provider if needed. 

If you do need to make medical decisions for the older person, the more prepared you are ahead of time, the easier it will be and the more sure you will be that you are doing the right thing.