By National Institute on Aging, National Institutes of Health
One of the biggest challenges for caregivers, whether they live near their parents or far away, is how to help them think about and plan for their future health care preferences?
Making advance care plans is a key step for your parent to take to be sure that his or her health care preferences are known. Health care providers can only respect wishes that have been made known and are documented in the medical record. Advance care planning can help your family avoid some of the conflicts that can occur when family members disagree over treatment decisions.
It may be easier to make certain decisions after discussing them with family, clergy members, or health care providers. Decisions about forgoing treatment, for instance, or ending life support, involve complex emotional issues and are hard for many people to make alone. Try to make peace with yourself and your family, whatever the decision. As one caregiver put it, "So much of the task is wading through your own feelings—and the rest is just figuring out what to do."
When thinking about the future consider:
- Naming a surrogate decision maker (a surrogate has the authority to make decisions on behalf of someone who is too ill to do so)
- Stating which treatment results are desirable and which ones are unacceptable
- Discussing what to do in an emergency
- Noting preferences regarding any possible treatments, and whether or not a time-limited trial would be acceptable (for instance, 5 days on a ventilator to recover some strength; a week with a feeding tube, and so on)
- Talking to the doctor and surrogate about preferences and including written instructions in the medical record
Advance care planning is an ongoing process. As an illness progresses and circumstances change, your parent may want to revisit his or her preferences. If so, be sure to update all written instructions and share the changes with health care providers and anyone who assists with care.
Try to approach decision-making tasks by recognizing that you are working with a parent, not for a parent (unless you are healthcare proxy or agent, in which case, you will be implementing a family member's decisions). How will you know when the advance care plans are complete and that you have covered all the bases? A complete plan will:
- Be very specific and detailed and cover what is to be done in a variety of medical situations
- Name a healthcare proxy
- Be recorded in the medical record
- Be readily available to any caregiver in the home, nursing home, or hospital
Advance Directives, Living Wills, and Power of Attorney
What is the difference between an advance directive and a living will? The terms are confusing. Advance directives are oral and written instructions about future medical care should your parent become unable to make decisions (for example, unconscious or too ill to communicate). Each state regulates the use of advance directives differently. A living will is one type of advance directive. It takes effect when the patient is terminally ill.
Advance directives are not set in stone. A patient can revise and update the contents as often as he or she wishes. Patients and caregivers should discuss these decisions—and any changes in them—and keep the health care team informed. Everyone involved should be aware of your parents' treatment preferences. Because state laws vary, check with your Area Agency on Aging, a lawyer, or financial planner. They may have information on wills, trusts, estates, inheritance taxes, insurance, Medicare, and Medicaid.
The person who has the authority to make medical decisions on another person's behalf is called a healthcare proxy. The terms "healthcare proxy" and "healthcare agent" or "surrogate" are used interchangeably. These responsibilities are called "durable" (for example, you may hear the phrase "durable power of attorney") because they remain in effect even if your parent is unable to make decisions. Most people appoint a close friend or family member. Some people turn to a trusted lawyer or member of the clergy. The designated person should be able to understand the treatment choices. Know your parents' values, and support their decisions.
The decision to name a healthcare proxy is extremely important. A written document, kept in the medical record and identifying the designated proxy, should always be up-to-date.
Durable medical power of attorney forms do not give explicit guidance to the proxy about what decisions to make. Many states have developed forms that combine the intent of the durable power of attorney (to have an advocate) and the intent of the living will (to state choices for treatment at the end of life). These combination forms may be more effective than either of the two used individually. Each State regulates advance directives differently, so you will need to consult with the physician, nurse, social worker, or family lawyer to know what is required. It's also a good idea to check to make sure that all financial matters, including wills and life insurance policies, are in order.
What Other Information Should Caregivers Know About?
The answer to this question is different for every family. You might want to help organize the following information and update it as needed. This list is just a starting point:
- Full legal name and residence
- Birth date and place
- Social Security number
- Employer(s) and dates of employment
- Education and military records
- Sources of income and assets; investment income (stocks, bonds, property)
- Insurance policies, bank accounts, deeds, investments, and other valuables
- Most recent income tax return
- Money owed, to whom, and when payments are due
- Credit card and charge account names and numbers
Another aspect of long-distance caregiving that terrifies adult children, is planning for their parents' death. For example, when Ellen's father, Sam, was diagnosed with congestive heart failure, she was 4 months into her second pregnancy. Her mother had died several years earlier. During her mother's illness Ellen, then single, had gone home almost every weekend to help her father and be with her mother. After her mother's death, she stayed close to her dad, even helping him move to an assisted living facility in his own town. Sam was happy. He enjoyed playing bridge, dining in the common room, and taking walks through his hometown. Over time, Ellen did her best to visit her father. With two young children, she couldn't get there regularly, but she made a point of calling Sam twice a week. Eventually it became harder for Sam to catch his breath and on some days he was too tired to get out of bed. Sam died quietly one night in his sleep. Ellen said she had no regrets: She had done everything she needed to do in her relationship with her father. Knowing this comforted her.
The news that a family member is dying is difficult to bear—and yet, it is a basic part of life. When you hear that a parent has a terminal illness, you may be flooded with emotions: Sorrow, disbelief, anger, anxiety. It can be hard to know what to do or what to say. Fortunately, many organizations are working to improve the lives of dying people and their families. Try to locate a hospice program. Hospice provides special care for people who are near the end of life. Check with Medicare for information on hospice benefits.
Talk to your own friends, clergy, or colleagues. Just about everyone has experienced the serious illness and death of a beloved friend or family member. Exchanging stories can help you as you cope with your own loss and with trying to decide what you can do.
Contact your parent's doctor and talk to your own doctor as well to find out what will need to be done, the kinds of care that your mother or father is likely to need, and how you can arrange for it to happen.
Some people find that it is very hard to talk about death and dying, and will go to great lengths to avoid the subject. Difficult as it is, talk to your parents about what is going on, but if you can't have that conversation, don't let that add to your worry. There is no single "right" way to approach the death of a loved one.