1. A program for family and friends caring for older people at home
Advance Directives
A program for family and friends caring for older people at home
More and more families are caring for older adults at home, and providing that care can be one of the most rewarding experiences but also one of the most challenging.
HealthinAging.org has created this presentation on Advance Directives to provide you, the caregiver, with advice and guidance to help you navigate this process. The presentation will explain the problem, and provides clear, practical instructions for dealing with caregiving challenges, including when to seek professional help.

2. Understanding the Problem
We should start by understanding what advance directives are and how they can be helpful.

3. Understanding the Problem
Sometimes, decisions about medical treatments must be made when an older person is unable (too sick, weak or confused) 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 an older person to make decisions for their self. This inability to make one’s own decisions could also happen with Alzheimer's disease, after surgery, or during a terminal illness, coma, or stroke.
When this happens, you may be asked to work with healthcare providers to make decisions that the older person would want if they could speak for their self. Making medical decisions for someone else can be difficult. Family members may disagree with one another or with the provider. They may not understand the older person's condition, or they might not be sure what the person would want.

4. Understanding the Problem
Forms called “Advance Directives” can make decision making in those situations easier for others:
The older person should complete them before they become ill
They make it more likely that decisions will be made that keep with the sick older person’s wishes
These forms 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.
Many caregivers have said that these documents helped them a great deal when health care treatment decisions needed to be made about their loved one. In addition, they may assist caregivers to better represent the interests of their loved ones when discussing health care decisions. They can also minimize the stress associated with emotionally difficult decisions.

5. Understanding the Problem
Older adults should consider 2 types of Advance Directives:
living will
health-care proxy (also called "durable power of attorney for health care”)
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.
Health Care Proxies allow people to choose someone else to make decisions for them if they are unable to do so themselves.

6. Understanding the Problem
Your goals are to:
Help the older person 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 medical decisions
Encourage the older person to discuss his or her values with family and friends, and to fill out Advance Directive forms
Your goals are to
Help the older person 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 medical decisions.
Encourage the older adult to discuss his or her values with family and friends, and to fill out Advance Directive forms

7. When to Get Professional Help
Call a healthcare provider to make an appointment to talk about advance directives.
Older adults also should make an appointment to talk to a healthcare provider about advance directives

8. When to Get Professional Help
Why talk to a healthcare provider?
They can provide important information
The older person can give them important information
The healthcare provider will then know, first hand, what the older person’s wishes are
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.
They can provide 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 them 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 the them (and caregivers) to document and carry out those wishes.

9. When to Get Professional Help
The older person doesn’t need to see a lawyer to fill out Advance Directives.
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.
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. You can obtain free advance directive forms from most healthcare providers’ offices.

10. The Older Person Should Ask
What is my health like now, and what should I expect my health to be like in the future?
Here are some 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?

11. The Older Person Should Ask
Have them talk about situations they are concerned about
Here are some issues people often are concerned about:
not being able to think clearly about pain
being a burden on their families
needing others to take care of them
about financial costs.
It helps for the older person to talk to the healthcare provider about their greatest fears, and situations they consider worse than death. They should also mention situations that would be so bad that they would not want any medical treatments to prolong their life. And tell the healthcare provider what it is about these situations that makes them feel this way.

12. What You Can Do To Help
Now we’ll discuss some things that you can do to help an older person make an advance directive.

13. 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.

14. What You Can Do To Help
The older person should think about what kind of person they want to make these decisions in their 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.

15. What You Can Do To Help
Be sure that the person selected by the older person feels comfortable about serving as a proxy and knows what the older adult wants
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 unlikely to recover or in a permanent coma?
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.

16. What You Can Do To Help
Help the person fill out a living will (advance directive)
A living will states a person’s wishes about medical care if he or she is close to death or too ill to make decisions
You can help the older person fill out a living will.
A living will states a person’s wishes about medical care if he or she is 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 he or she 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.

17. Issues that Should Be Included in Discussions
What illness or permanent disability would be unacceptable to the older person?
Find out what illness or permanent disability would be unacceptable to the older person. For example:
Paralysis
No longer recognizing family
Very painful treatments or illnesses
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?

18. Issues that Should Be Included in Discussions
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, if they are dying. Or how long a difficult treatment might extend their life. Does it make a difference if the treatment leads to a few few weeks or months more of life, compared to years more?

19. Issues that Should Be Included in Discussions
What medical treatments would not be wanted under any circumstances?
What medical treatments would not be wanted under any circumstances, even if the treatments were used only temporarily?

20. Issues that Should Be Included in Discussions
What medical treatments are acceptable on a temporary basis to help recover from an illness?
What medical treatments are acceptable on a temporary basis to help recover from an illness but would not be acceptable permanently?

21. Carrying Out Your Plan
Even when you have excellent plans, there are obstacles or problems that may prevent you from carrying out your plans. Here are some.

22. Possible Problems Carrying Out Your Plan
“My mother doesn't want to talk about future health care decisions.”
“I don't feel comfortable being a proxy.”
“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 your loved one doesn't want to talk about these issues. The older person 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.

23. Possible Problems Carrying Out Your Plan
“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.”
“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.

24. Possible Problems Carrying Out Your Plan
“My father is sick and I'm his proxy. I’m worried that I will have trouble talking to his healthcare providers.”
“My father is sick and I'm his proxy. I’m worried that I will have trouble talking to his healthcare providers.”
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.

25. Possible Problems Carrying Out Your Plan
Think of other problems that could interfere with 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.

26. Checking on Progress Unfortunately, it is easy to delay this task
Set a goal of discussing and having a signed advance directive by a certain date
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 the older person’s 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. Call one of the resources listed below or 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.

27. Copyright © 2015 by the AGS Health in Aging Foundation
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This Caregiving Tips program is based on the 2004 Eldercare at Home, 2nd Edition presentation kit, and has been updated by the AGS Public Education Committee.
Copyright © 2015 by the AGS Health in Aging Foundation
For more information, visit the AGS Health in Aging Foundation’s website or call the toll free number provided above.