Most people do not want to think about death and dying -- so they don't. Until they have to.
Unfortunately, that often means that families are left struggling with difficult decisions about important matters, such as whether or not Mom would like to be kept alive using a ventilator, or who should be in charge of managing Dad's financial affairs, because Mom or Dad never made clear what they wanted for themselves.
Advance directives are important tools for anyone to have, because even the healthiest person could experience a sudden accident and not be able to speak for herself. But when you have a life-threatening illness, it's particularly critical to make clear, in writing, what your wishes are should the time come when you can't express them yourself.
There are two primary kinds of advance directives:
- A living will spells out your preferences about certain kinds of life-sustaining treatments. For example, you can indicate whether you do or do not want interventions such as cardiac resuscitation, tube feeding, and mechanical respiration.
- A power of attorney directive names someone that you trust to act as your agent if you are unable to speak for yourself. If you want to choose one person to speak for you on health care matters, and someone else to make financial decisions, you can do separate financial and health care powers of attorney.
A power of attorney may be more flexible, since it's impossible to predict all the medical decisions that might come up in the future and spell out your exact preferences for all of these situations. Many states actually combine the living will and power of attorney into one "advance directive" form.
You should only assign someone power of attorney to make your medical decisions if you have someone you trust to carry out your wishes. For example, your husband or daughter might find it painful to comply with your preference not to have a breathing tube inserted.
Thinking About a Living Will
When you do choose a medical power of attorney, you will probably want to put some specific things in writing as to the kind of care you would want should you not be able to express your wishes directly. Some things to think about:
- Do you want all pain relief options available, even if they may have the side effect of unintentionally hastening your death?
- Which life-sustaining options -- such as tube feeding, mechanical ventilation, CPR, and antibiotics -- do you want, and which would you not want? How long would you want these options to be continued if your condition is not improving?
- Would you want artificial life support removed if you are found to be irreversibly brain dead, or do you prefer that your life be sustained until your heart stops on its own?
- What are your feelings about organ donation?
- How do you want your body to be disposed of after death? (Burial, cremation, medical research?) Which funeral home or other organization do you want to handle the arrangements?
Each state has its own form for advance directives, giving you questions to answer and specific things that you can choose to accept or reject, but you can always add additional information about your wishes if the form does not include everything you're concerned about.
Choosing a Medical Power of Attorney
If you decide to choose a medical power of attorney, here are some things to look for:
- Someone who is not intimidated by medical professionals and is willing to ask challenging questions
- Someone who can put aside their own feelings about a particular procedure or medical option in order to ensure that your wishes are carried out
- Someone who understands your wishes about medical options and end-of-life care
You might also want to think about an alternate power of attorney if your first choice is unable to carry out the job.
Once you choose a medical power of attorney, continue talking with him or her on an ongoing basis about possible situations that might occur, and how you would want them handled. Although you cannot anticipate every possibility, the more you talk with this person about your wishes in general, the better they will understand your overall desires about care at the end of your life.
Here are some possibilities you may want to discuss:
- How do you feel about being fed or hydrated through a tube?
- Would you want to receive certain treatments, like antibiotics, tube feeding, or mechanical ventilation, for a trial period and have them stopped if a certain time passed with no improvement?
- How aggressive do you want your doctors to be about the use of CPR should your heart stop?
- What are you most afraid of regarding treatments you might receive?
- What are you afraid might happen if you can't make decisions for yourself?
- Are there circumstances under which you would want more aggressive measures taken to sustain your life, and others under which you wouldn't?
Making It Legal
Whether you write a living will, choose a medical power of attorney, or both, you will need to make those decisions legally binding, in writing. There are state-specific forms for advance directives like these; you do not need an attorney to prepare them.
You can download the forms you need. Each state's form is different, so be sure to use the correct form for your state. You will generally need to have your form witnessed and/or notarized, so take careful note of the requirements for your state.
Once you have completed your advance directive, you should ensure that everyone involved in your care has a copy and is aware of it: your doctor, your hospital, your hospice or palliative care team, important family members, and your attorney if you have one.