Families plan and prepare for major life events: attending college, getting married, having a baby, and retiring at the end of a career. However, few plan for events such as how we would want our health care delivered if we become very ill.
Or some people may be adamant about not going into a nursing home but they fail to plan for securing long-term care insurance, home modifications, or having someone to advocate for them if they cannot communicate. Rarely do we think that far head.
These are decisions that we all should be thinking about. They should be documented so that our family members, health care providers, etc. will know our wishes for our care.
In generations past, people who were terminally ill remained at home, dying quickly from infectious diseases or accidents. Today, with the deluge of new medicines and technologies, we have become a “death denying” society, in which death is an enemy that must be beaten at all costs. We focus on fighting death rather than preparing for its inevitability.
Talking with family members, physicians, or social workers about your desires for medical care at the end of your life is called advance care planning. This is an opportunity to express what kinds of life-sustaining treatment you would want—or do not want—in case you are unable to decide or speak for yourself.
If you are close to death, you may not want to have Cardio Pulmonary Resuscitation (CPR) if your heart stops, for example, or other treatments such as pain medicine and tube feedings.
Advance care planning can be difficult because it requires you to evaluate your priorities about the quality of life and understand different life-sustaining medical treatments and the implications for choosing or refusing various options.
Every adult can benefit from Advance Care Planning. Planning is particularly important for those who are terminally ill. Research shows that people suffering from chronic illness also benefit from advance care planning. Even healthy people should consider their wishes for end-of-life care and discuss their decisions with family members or professionals, before a health care crisis occurs.
Because an accident or serious illness can happen suddenly, and at any time, thinking about this topic when you are capable of making decisions is important. Sharing these decisions with your family helps to ease their burden and reduce their uncertainty if they ever have to make health care decisions on your behalf.
Studies funded by the Agency for Healthcare Research and Quality (AHRQ) have shown that people who talked with their family, physician, or others about their preferences for end-of-life care had less fear and anxiety, felt more in control of their own medical care, and believed their doctor had a better understanding of their wishes. Other potential benefits of advance care planning according to the National Institutes of Health include:
- Decreased personal worry
- Decreased feelings of helplessness and guilt for the family
- Decreased implementation of costly, specialized medical interventions
- Decreased overall health care costs
Verbally expressing your wishes for future medical care with others is helpful and legally binding, but it is more important to write your instructions on an advanced directives form that will be used in the event that others must make medical treatment decisions. The two types of advance directives are the living will and the durable power of attorney.
A living will is a written, legal document that specifies what kind of treatment you want in certain situations. This may include specific care options, such as CPR if cardiac or respiratory arrest occurs, artificial feeding options, prolonged use of a respirator, if unable to breathe adequately alone, and blood transfusions.
The durable power of attorney for health care allows you to name someone who can make medical decisions for you if you are unconscious or lose your ability to communicate. This document does not appoint anyone to make legal or financial decisions for you.
Every state has its own laws regarding advance directives, so ask social workers or health care providers about the laws in your state. The federal 1990 Patient Self-Determination Act requires hospitals, nursing homes, and other medical institutions that receive Medicare and Medicaid funding to provide written information about advance care directives to all patients at the time of admission.
Having an advance directive is the best way to make your choices known. Yet, in an AHRQ study, less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record. An estimated 75 percent of Americans do not have written directives for their families.
- Obtain a living will form and a durable power of attorney for health care form from your health care provider. It is recommended that both forms are used.
- Complete, sign, and date the forms. The forms are legal, and it is not necessary to hire a lawyer to create them. State laws on the format of these documents vary. Some states require that forms are notarized; others specify that signed and witnessed forms are sufficient.
- Provide copies to your family members and health care providers. Bring a copy with you if you are admitted to a hospital.
Family members may have a difficult time discussing advance care planning, even when it becomes essential. When families do not know what their loved one would want in end-of-life care should a crisis arise, families must make the decisions when they are emotionally overwrought. Some people live with the lingering doubt about whether they have made the right decision or not.
An opportunity for discussing advance care plans could be during significant life events, such as the birth of a child or death of a family member. Other opportunities when this discussion would be pertinent is while drawing up a will or estate planning, or when major illness requires that a family member move into a retirement community or nursing home.
A growing trend is to seek help with planning through geriatric social workers to work through family issues. Social workers can help you explore the values that will guide your decision-making process. They will also assist with obtaining and completing forms, and ensuring that copies of your forms are available to doctors and other appropriate professionals.
Physicians, nurses, and elder law attorneys can also help with advance care planning. Planning ahead can give you peace of mind that your care decisions will be honored at the end of your life.