Eldercare at Home: Advanced Directives
Caregiving How Tos
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.
When the person is healthier and able to think clearly, he or she should consider making "health care proxy" (also called "durable power of attorney for health care - DPAHC") and "living wills" Decisions. These are types of advance directives that are also legal documents allowing people to declare what they would want done medically in the case of a terminal illness or in the event of a coma or stroke. 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 doctor 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 doctors 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 his or her doctor and family
Talking to a doctor
There are at least three good reasons why you should encourage the older person to have a discussion with the doctor about planning for how decisions will be made for life-threatening illnesses:
- The doctor can provide important information about the types of illnesses (such as Alzheimer's Disease) that make people unable to speak for themselves, the types of treatments that are sometimes used to prolong life, and how well the treatments work.
- The older person can give the doctor important information about his or her own goals for future medical care.
- The doctor will then know, first hand, what the older person's wishes are. This will help the doctor (and caregivers) to carry out those wishes.
Here are some of the things that the older person should ask the doctor:
- 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 doctor:
- Situations he or she is concerned about. 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 he or she would not want any medical treatments to prolong his or her life. The older person should talk about what it is about these situations that makes him or her feel this way?
Obtaining proper forms for the person's wishes. Lawyers can answer questions about how advance directives should work and how they will be interpreted by the courts in the state the older person resides. 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 doctors' offices and from organizations listed here.
You should encourage the older person to choose someone to make medical decisions if in the future he or she is 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 for him or her. Along with choosing this proxy, the older person needs to discuss his or her wishes about his or her 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 upon which decisions for proxies are made:
- My proxy will follow my instructions.
- 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 older person can identify his or her proxy in three ways-by discussing him or her with you or others, by writing the name in a living will, and/or by completing a "Durable Power of Attorney for Health Care - DPAHC" form that assigns a proxy. All fifty states recognize the legality of the health care proxy document. If a person does not name a health care proxy in advance, some, but not all, states have a process to determine who should make decisions for the patient.
Be sure that the person selected by the older person feels comfortable about serving as a proxy. The person who will be the proxy should talk with the older person concerning that person's feelings about life, illness, and death. The doctor could be included in the discussions, but, if this cannot be arranged, the same issues should be discussed with the doctor separately. The more the proxy and the doctor talk, the more they will understand what the older person would want.
They should discuss questions such as: Would the 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 person want to be on a respirator (breathing machine) even if he or she is unlikely to recover or is in a permanent coma? It is through discussions like these that the patient, the proxy, and the doctor can be confident that medical care will be appropriate and based on the patient's own values.
- Issues that should be included in discussions
What illness or permanent disability would be unacceptable to the older person, such as paralysis, or being kept alive for a prolonged period by a respirator? Discuss the care of a terminal illness with this person. Would he or she want any medical treatments to prolong life or only medicines to help him or her remain comfortable? Why does the older person feel this way?
What should the proxy think about in decisions about medical treatments? For example, an important is this: is comfort very important? Is being conscious very important? Isr being in control very important? These questions can be applied to both the older person and the proxy.
What medical treatments would not be wanted under any circumstances, even if the treatment 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)
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 be given to the proxy and the doctor. It should also be included in the medical record if the older person is admitted to a hospital or skilled nursing facility to inform 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 upon joining an Health Maintenance Organization (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 doctor 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. You can find downloads of state documents at http://www.caringinfo.org.
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.
Problems You Might Have Carrying Out Your Plan
"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 that 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 proxy, his doctor can make medical decisions in consultation with you and others who knew him. The doctor needs to know what your husband would say if he could speak for himself. You can tell the doctor 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 doctor should work together as a team. The doctor will give you information and make recommendations. Your job is to say what you think your father would want.
Doctors and hospital staff are there to help you and the patient. If you feel intimidated by the 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 doctor or other staff 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 section? For example, will the older person cooperate? Will other people help? How will you explain your needs to other people? Do you have the time and energy to carry out this plan?
- 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.
- 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 his or her wishes and encourage filling out the form. If the older person is unable or unwilling to complete the form, then try to learn what he or she would want done so that you can tell this to the doctor 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.