First Step: Explore Beliefs and Values
Healthcare decisions are influenced by underlying values—our priorities, spiritual beliefs, and feelings about quality of life. Before you discuss the specific medical choices in this section, you might try some of the exercises in the
Beliefs and Values section of the Toolkit. Knowing your loved one’s core values will help you draft an advance directive document. But it will also give you crucial background information that can help you make informed decisions for your loved one, especially when facing a situation or crisis that you didn’t plan for.
Next Step: Create an Advance Directive
Having an advance directive is an important part of end-of-life planning. Should someone become unable to communicate or make decisions (which can happen toward the end of a terminal illness), the advance directive helps to ensure that a person’s wishes are known to loved ones and healthcare providers.
An advance directive is usually a combination of these two documents.
- A Power of Attorney for Healthcare document that names another person to make medical decisions for you, should you become incapacitated.
- A living will that gives instructions for medical treatments you want or do not want in the case of a terminal or vegetative diagnosis.
Obviously, people who’ve been diagnosed with a life-threatening illness should prepare an advance directive. But keep in mind that every adult could benefit from an advance directive, regardless of their age and health conditions. So if you don’t already have your own advance directive, consider making one with your loved one. The tools in this part of the Toolkit will help the two of you think about the issues and choices involved in an advance directive.
Broaching the Topic
Thinking ahead toward the end of life is difficult. Many people would rather not talk about such morbid topics as comas, feeding tubes, and respirators. It may take some encouragement to get your loved one to tackle this conversation, but once she does, your relationship may benefit, and you’ll both have greater peace of mind. Our article on
Getting Started suggests ways to sensitively broach the subject of healthcare planning.
Tools for Deciding on a Power of Attorney for Healthcare
A Healthcare Power of Attorney document allows a representative to make medical decisions for someone who is physically or mentally incapable of making decisions for herself. This representative is usually called a healthcare proxy or agent.
Choosing a Healthcare Proxy
Following are some things to consider when choosing a healthcare proxy. Your loved one may wish to answer these questions for several potential candidates and compare their “scores.” Also, it’s best to choose at least one backup person in case the first choice cannot serve.
- Does this person meet the legal criteria in my state for power of attorney for healthcare? Tip: Laws differ from state to state, but most states don’t allow a patient’s healthcare providers or their staff to act as proxies.
- Would this person be readily available to consult with my healthcare providers (i.e., he lives close by or is willing to travel)?
- Would this person be willing to speak for me on my behalf?
- Would this person be able to act on my wishes and separate her own feelings from mine?
- Can this person handle the responsibility?
- Would this person be willing to talk with me now about sensitive issues and listen to my wishes?
- Is this person able to handle conflicting opinions between family members, friends, and medical personnel?
- Other issues that are important to me about choosing a healthcare proxy:
Asking Someone to Be Your Proxy
When you ask someone to be your healthcare proxy, you are asking that person to assume a big responsibility. You do not want the person to agree to be your spokesperson if he or she has strong misgivings. So be sure to tell the person that you won’t be offended or hurt if they can’t do this for you.
To find out if the person is willing, you might ask the following questions.
- Would you be willing to represent my views about medical decisions if I can’t speak for myself?
- Can you make decisions for me that are based on my values, preferences, and wishes—even if they’re not like yours?
If the person agrees to be your spokesperson, here are some things to discuss.
- Reassure the person that you’re not expecting him or her to be “superhuman” or all-knowing.
- Discuss your beliefs and values about what would matter most to you if you were to become so ill that you couldn’t speak for yourself. You can use the values exercises to consider and share your thoughts.
- Give the person a copy of your advance directive or living will and make sure he or she understands it. A living will is a statement of treatments you wish to have or not have under specific medical circumstances. Try the exercises in the living will section below to help you consider your thoughts.
- Give the person explicit permission to make decisions for you, especially for those situations that you haven’t discussed or couldn’t predict.
- Let the person know who else you would like him or her to confer with, if anyone, before making a healthcare decision.
- Ask your proxy to be proactive about communicating your wishes to healthcare providers. This may include making sure copies of your advance directive are filed upon your admission to a healthcare center and advocating for specific care choices with the medical staff.
Let Others Know Your Decisions
Besides talking with your healthcare proxy, it’s a good idea to share your values and priorities with the following people, to make sure everyone’s on the same page.
- Healthcare providers.
- Family members and other loved ones.
- Caregivers.
- Anyone else who expresses a wish to be involved.
You should also let people know whom you have chosen as your healthcare proxy, and ask them to defer to that person’s authority when the time comes. This is especially true when your proxy is not an immediate family member.
Choosing to Become a Healthcare Proxy
The decision to become a spokesperson for someone should not be taken lightly. It involves taking responsibility for that person’s healthcare decisions at a time of crisis, and not all people can handle that kind of pressure. Many families simply assume a spouse or eldest child will take over, but such assumptions can lead to conflicts down the road. If you’re considering becoming a loved one’s proxy, you might want to take the time to
talk with your loved one about her values and wishes, and reflect on the following questions for yourself.
- Am I a good decision maker?
- Will I be able to keep a clear head if my loved one is incapacitated or dying?
- Will I be able to take on the responsibility, given my other obligations?
- Do I understand my loved one’s values and wishes, and am I willing to abide by them, even if they conflict with my own?
- Will I be able to handle conflicting opinions between family members, friends, and medical personnel?
- Do I think I’ll be able to flexibly interpret my loved one’s wishes, especially for those situations that we haven’t discussed or couldn’t predict?
- Can I be assertive with medical personnel about my loved one’s wishes and do what it takes to get the information I need?
Tools for Creating a Living Will
A living will is a legal document that talks about which treatments to use or not use under specific medical circumstances. The tools in this part of the Toolkit will help you and your loved one think about the medical issues and choices that are part of a living will.
Medical Values and Wishes
Instructions: Ask your loved one to agree, disagree, or comment on the following statements.
- I want my life prolonged as long as possible under all circumstances.
- I want all possible treatments, even if my doctors didn’t think they could help me, and regardless of the side effects, because I would hope for a miracle cure that could prolong my life.
- I want life-sustaining treatments only if the doctor thinks there’s a good chance I’ll be able to recover some quality of life (what do I mean by quality of life?). Note: What is a “good chance?” Over 5%? Over 50%?
- How do you feel about life-sustaining treatments in the case of a terminal illness? Permanent coma? Irreversible chronic illness or disease (e.g., Parkinson’s or Alzheimer’s)?
- I prefer hospice care, with the goal of keeping me comfortable in my home during the final period of life, as an alternative to hospitalization.
- In the case of a terminal diagnosis, I want the illness to take its course without medical intervention, except for comfort measures, and without the assistance of hospice.
Specific Medical Treatments
It’s common for people to state their medical wishes in general terms, such as “I don’t want to be hooked up to a machine.” Unfortunately, instructions of this kind can be hard for a family to interpret under differing circumstances. Does “machine” mean a breathing machine? Does it mean no life-sustaining treatments at all (e.g., artificial nutrition)? Is it OK to be on a machine temporarily, if that might mean living longer?
To avoid misinterpreting a loved one’s wishes, it can help to mention the conditions when specific life-sustaining treatments should be applied, withheld (never given), or withdrawn (taken away after being applied).
Instructions: For the following medical treatments and procedures, circle as many of the listed circumstances as apply. Use the blank space for any circumstances not listed. For more information on each treatment or procedure, click on the links.
- I want to be on a breathing machine.
- Never.
- If it will extend my life.
- Just to make me more comfortable, not to extend my life.
- As long as it doesn’t cause excessive discomfort.
- As long as it doesn’t cause financial hardship.
- If my doctor thinks it’s best.
- If my family thinks it’s best.
- If I have a good chance of being taken off it in ________ amount of time and restoring some quality of life. What do I mean by quality of life?
- Long enough for my family to say goodbye.
- Other ________________.
- I want to be given nutrition through a tube.
Same conditions as above.
- I want to be given water through a tube.
Same conditions as above.
- I want kidney dialysis.
Same conditions as above.
- I want antibiotics.
Same conditions as above.
- I want chemotherapy.
- Never.
- If it will extend my life.
- Just to make me more comfortable, not to extend my life.
- As long as it doesn’t cause too much discomfort, or ruin my quality of life.
- As long as it doesn’t cause financial hardship.
- If my doctor thinks it’s best.
- If my family thinks it’s best.
- Other ________________.
- I want radiation therapy.
Same conditions as chemotherapy.
- I want surgery.
Same conditions as chemotherapy.
- I want cardiopulmonary resuscitation (CPR).
- Always; I want my life extended as long as possible.
- Never; I want to die naturally.
- As long as it doesn’t cause injury or a lot of discomfort.
- Not if it has little chance of succeeding.
- Only if there’s a chance I’ll be restored some quality of life.
- Other ________________.
- I want pain medication.
- Never.
- When the doctor recommends it.
- Enough to make me comfortable, even if it means I’m sometimes unconscious.
- Enough to make me comfortable, even if it hastens death.
- Yes, but I want to remain alert, even if I’m in some pain.
- Other ________________.
- I want my symptoms (besides pain) treated.
- Never.
- When the doctor recommends it.
- Just so I’m comfortable.
- In order to extend my life as long as possible.
- To enhance my quality of life, regardless of length.
- Other ________________.
- It’s OK to place me in a nursing home.
- Never.
- Only if there’s no alternative.
- Only if my care is too much of a burden to my home caregivers.
- If it’s the best thing for my family.
- If it doesn’t cause financial hardship.
- If I continue to get hospice care.
- As long as I, or my healthcare representative, chooses the place.
- As long as my loved ones visit me regularly.Other ________________.
- It’s OK to send me to the hospital.
- Never.
- If my doctor thinks it’s best.
- Only if there’s no alternative.
- Only if my care is too much of a burden to my home caregivers.
- Only if the doctor thinks I’ll be able to come home again.
- If it doesn’t cause financial hardship.
- If I continue to get hospice care.
- If I have a private room.
- Other ________________.
- Do you believe in alternative forms of treatment, such as healing through prayer, acupuncture, or herbal remedies? What are the treatments you want included in your care?
- For difficult healthcare decisions, who would you want consulted to make decisions, either with you or on your behalf? Rate the following from most to least important.
- Doctors and medical staff.
- Hospice staff.
- Family member or friend ________________(Have you made this person your legal healthcare proxy?)
- Pastor, priest, rabbi, or other spiritual advisor.
- Other _________________________.
Organ Donation and Autopsy
Sometimes after death, organs and tissues can be used to help people who need them. Family members must give consent for this, and the process is easier if the donor has stated her wishes in writing, either in an advance directive or in a will.
Instructions: To find out your loved one’s feelings about donation and autopsy, ask the following questions.
- Do you want to donate any viable organs or tissues for transplant? If yes, have you filled out an organ donor card?
- Do you want to donate all or part of your body for medical teaching or research? If yes, do you have a preference for the institution? (Note that after the institution is finished with the body, the remains are cremated and returned to the family).
- Do you permit an autopsy, if needed? (Note that after an autopsy, the body can still be shown and buried.)
Translating Wishes into Legal Language
After your loved one has clarified her values and specific wishes for end-of-life care, those wishes must be translated into a legally binding advance directive document. The most reliable way to do this is to hire a reputable
elder law or estate law attorney—a lawyer who is experienced in such documents. However, consulting with an attorney is not required; an advance directive can be prepared by anyone and still be legal.
If you plan to do it yourself, you can download sample advance directive legal forms for each state in PDF format from the
Caring Connections website.
Glossary
Antibiotics: Drugs used to kill or slow the growth of bacteria that cause infections. Infections such as pneumonia are common in the late stages of a terminal illness; using antibiotics to treat them often prolongs the life of the dying patient.
Artificial nutrition and hydration (feeding tube): Feeding tubes are used to deliver nutrition and fluids to patients who have lost the ability to swallow. The tube either goes into the stomach through the nose and throat, or is surgically placed in the wall of the stomach. Like breathing machines, feeding tubes may sustain the patient until he recovers the ability to swallow, or be used to prolong life for those who will never recover.
Cardio-pulmonary resuscitation (CPR): CPR is used to resuscitate a patient whose breathing and/or heart has stopped. It involves vigorous pressing on the chest, mouth-to-mouth or ventilator artificial breathing, electrical shock to the chest, and medications applied into a vein. The success rate for CPR depends on many factors: overall health, age, where it’s given (home or hospital, etc.), and how quickly it’s applied. The success rate ranges between 25-50% for people in good health under 65. Over age 65, the rate drops to 1-4%. CPR is rarely successful in patients with chronic illnesses that affect vital organs. Less than 10 out of 100 hospitalized patients respond to CPR by returning to the state they were in before their heart stopped.
Chemotherapy: A type of cancer treatment that gives chemicals orally or through he vein that kill cancer cells. Damage to healthy cells may also occur, which can cause side effects such as fatigue, pain, nausea, vomiting, constipation, hair loss, loss of appetite, temporary or permanent kidney damage, etc. The type and severity of side effects depend on the drug being taken, how much is used, how long it is taken, and overall health. The treatment may be prescribed with the intent of curing the cancer, or as a palliative measure to make a terminally ill patient more comfortable. In the latter case, the side effects may cause more discomfort than the illness.
Coma: Coma is a state of unconsciousness that persists for some time. The patient looks asleep, but does not respond to stimulation. Coma can be caused by a head injury, severe stroke, or severe illness. Coma patients are usually cared for in hospitals or nursing homes because all of their care must be done by others, including tube feeding, hygiene care, and being turned to prevent bedsores. People who have been in comas and come out generally report no memory of any awareness during the coma, including that of pain or discomfort. If and when a person comes out of a coma depends on many factors, including age, what caused the coma, overall health, and the “stage” of the coma (lighter stages have a better chance of coming out than deeper stages)
Kidney dialysis: Dialysis is a process used for patients whose kidneys stop functioning. In a session lasting about 4 hours, blood is removed from a vein, circulated outside the body into a machine that removes waste products, and returned to another vein. Dialysis allows people who have kidney disease to live a near-normal life, though it doesn’t do as good a job as a healthy kidney, and dialysis patients may not feel well at times. If the patient has another serious illness involving the lungs, liver, or heart, dialysis may be complicated by problems regulating body fluids and waste products.
Life-sustaining treatments: Any of a number of medical treatments and procedures used to keep a patient alive who would otherwise die without them, including CPR, breathing machines, feeding tubes, antibiotics, and dialysis.
Mechanical ventilator (breathing machine): A medical device that takes over breathing for a patient who is unable to breathe on his own, by inserting a tube to the windpipe through the mouth, nose, or an incision at the base of the neck. Use of a ventilator makes it difficult or impossible to speak, and requires that the patient be either bedridden, or confined to a wheelchair (in the case of a paralyzed patient using a portable ventilator). A ventilator may be used on a short-term basis to help a patient recover from an injury or illness, or indefinitely, to prolong or sustain the life of a patient who may never recover.
Radiation therapy: A type of cancer treatment that uses high-energy radiation from x-rays and other sources to kill cancer cells and shrink tumors. Radiation may come from a machine outside the body, or from radioactive materials (isotopes) placed inside the body in the area of the cancer cells. Since radiation is a local treatment, side effects are usually confined to the area being treated. The early effects of radiation may be seen a few days or weeks after treatments have started and may continue for several weeks after treatments are completed. They include skin irritation and rash, soreness, fatigue, and hair loss, and localized problems like vomiting, nausea, constipation, loss of appetite, coughing, shortness of breath, sore throat, trouble swallowing, etc. As with chemotherapy, radiation may be prescribed with the intent of curing the cancer, or as a palliative measure to make a terminally ill patient more comfortable. In the latter case, the side effects may cause more discomfort than the illness.
Resources
Legal Counsel for the Elderly (LCE) has state‑specific guidebooks about advance directives. To order a booklet, send $5 per booklet (for shipping and handling) to the following address.
Legal Counsel for the Elderly (LCE)
American Association of Retired Persons
P.O. Box 96474
Washington, DC 20090‑6474
National Academy of Elder Law Attorneys answers legal questions; provides referrals to member lawyers.
(520) 881-4005
www.naela.org
American Association for Retired Persons runs a program that gives legal advice on wills and advance directives.
(800) 424-3410
www.aarp.org
Your Area Agency on Aging may offer legal aid to people over age 60.
Check the Eldercare Locator at (800) 677-1116 or
http://www.eldercare.gov/
Local chapters of condition-specific organizations, such as the American Cancer Society (
http://www.cancer.org/docroot/home/index.asp) and AIDS organizations, can provide legal advice, references to attorneys, and other resources.
Hospital associations, medical societies, and bar associations in your state or county, as well as your local area agency on aging (AAA), may also provide advance directive and estate planning advice for your state.