This is Part 1 in a Series on Preparing to Care for Family's Medical Needs
It’s one of those phone calls you hate to get: near midnight, in the middle of the work week, the hospital called to tell a dear friend, his dad had been admitted for heart problems. They said he was in the ICU with a possible heart attack and things didn’t look good….
He rushed down there to find him barely conscious. He opened his eyes briefly and said a few words about a trip they had taken together some 40 years ago. That was the last thing he ever said, even though he survived for several more days.
The doctor, two nurses, a couple of therapists pulled him aside and said that he had no chance of surviving with any quality of life. They recommended he be put on “comfort care” so he could pass peacefully, and asked for his “advance directive.” They contacted the conservator only to find out he didn’t have one! Without that legal document the conservator decided his only choice was to insist the hospital do everything possible to prolong his life. For the next week my friend watched his dad go through one torturous procedure after another to keep his heart beating. He was obviously suffering, but couldn’t express himself any more than to tap out a 1 or a 2 in answers to yes or no questions. Finally, after a week of legal maneuvering, they were able to give the hospital the authority to make his father comfortable and forego the extraordinary life saving measures. He passed quietly and comfortably two days later.
Family members looking to help their loved-ones make decisions about emergency or long-term medical care often find themselves in crisis – when loved ones are healthy, most people give little thought to preparing for situations where the family member cannot speak for themselves or make their wishes known. Family dynamics – most often differing opinions concerning the type, duration, and cost of emergency or long-term care – can also cloud issues or make timely decisions possible – or worse, they may lead to decisions that do not reflect the person’s true wishes.
A Simple Solution – The Advance Directive
The Advance Directive allows a person to share their choices and instructions for future health care. Among other things (depending on which form you use), you can use the Advanced Directive to:
- Name the person you trust to follow your health care choices, or to make decisions for you if you are unable to;
- Provides written instructions for your health care (both present and future) your named agent must follow;
- Lists alternate people in case your first named person isn’t available or willing to follow your wishes.
Whom Should I Choose to be my Health Care “Agent”?
- Choose someone you know well, who is trustworthy, who will honor your choices, and who is willing to make the hard choices that represent your wishes – even if others disagree.
- Determine the limits of your Agent’s decision-making. Typically, they will follow your wishes: this includes choosing a physician or specialist, authorizing tests or treatment, and follow any instructions about final arrangements after you die. This does NOT include disposition of finances, disposing of property, or oversight of your estate, unless specifically named within a will.
- Choose the limits under which this person can act as your agent. If they are not a blood relation, do you want them to serve even if there is a divorce/annulment (even if they are/were YOUR spouse)? What about if they move away or have their own serious health conditions?
- Choose at which point they can begin acting on your behalf. If you are going into a serious surgery, should they be allowed to speak for you if you are in surgery or recovery and there are complications? Would you prefer they act on your behalf ONLY if you are unable to speak/think/act for yourself permanently?
Making Choices with the Advance Directive:
- Life-Sustaining Treatments: If you become incapacitated, and doctors determine that you have a permanent injury that you will never recover from, do you want life-sustaining treatments? (This would include any machinery designed to artificially prolong your life.)
- Heroic Measures: If your heart has stopped, do you want CPR attempted? Would you prefer to die naturally? Do you have any conditions which may affect this choice (like a terminal illness)?
- How Would You Prefer to Die?
- If you are nearing death, what would you like family/friends/loved ones to do? (Prayers, music, rituals, etc.)
- Who should be contacted if nearing upon your death (Spiritual/faith community leader, phone number, etc.)
- Do you wish to donate organs or tissue for transplant or medical study, up to and including your entire body?
Making Your Wishes Legally Valid
In California, your Advanced Directive must be signed by you and TWO witnesses (at least ONE of them cannot be related by blood, marriage or adoption) OR it must be signed by you in the presence of a Notary Public. The California form also allows a special witness (Patient Advocate in a Medical Facility or an Ombudsman). There is also special language required for witnesses who sign your directive (this may vary by state).
Now That You Have an Advanced Directive
- Review your choices with your Health Care Agent – be certain they are willing and able to act on your behalf.
- Talk to your family about your choices and the reasons behind them. Make sure they know who your Agent is, and give them copies of your Advance Directive for their reference.
- Give a copy to your physician, and keep a copy for yourself. It is recommended you keep this in a manila envelope on your refrigerator so that emergency personnel have access to it during an emergency. If you have a caregiver agency helping you, they can assist you with this.
- If you are going to stay in a hospital, board and care, skilled nursing facility, or assisted living, make sure their administrative staff have a copy.
REVIEW Your Instructions Regularly
It is advisable to review your Advance Directive whenever any of the Five “D’s” occur:
- Decade – when you start a new decade in your life
- Death – whenever you experience the death of a loved one
- Divorce – when you experience divorce or other family change
- Diagnosis – when you are diagnosed with a serious health condition
- Decline – when you experience decline in your ability to care for yourself, or others, or are unable to live on your own.