Few decisions are more personal -- involving both health and death -- than those embodied in an advance health care directive or a living will, or a similar document. Some individuals want their lives prolonged by any means necessary, while others want medical treatments withheld, allowing for a natural death.
An advance health care directive lets caregivers and family and medical providers know a person's healthcare wishes if he's unable to speak for himself. The document can also appoint someone else to speak with legal authority for the person if he's unable to do so for himself.
If someone plans to set up an advance health care directive, living will, or similar document, here's what he needs to think about:
1. The person should consider how he wants to live during a terminal illness, and what his end-of-life preferences are when creating a health care directive or living will.
It's not easy to bring up the subject of dying (especially if it's your parent you're caring for). But you, the individual, and the rest of his family will gain some peace of mind if you can get him to start thinking and talking about this subject, and eventually to execute documents that set down his wishes.
- One way many people get this discussion started is by showing the person the advance health care documents they've prepared for themselves. This both breaks the ice and gives the person a model on which to base his own documents.
- The job is to get him thinking about what will be important to him when he is incapacitated, and particularly when he's dying, such as where he wants to be -- at home if possible, or in a hospital -- and what treatments (particularly life-prolonging ones) he wants and doesn't want.
- He also needs to think about who he wants to make decisions for him if and when he's unable to do so himself.
- The person should discuss these things with family, healthcare providers, and trusted advisors who will help him consider his wishes, options, and fears.
- But remember that a conversation doesn't have the same legal force as an advance health care directive or similar written document, even if a doctor records it. In most states, only a written, signed, and witnessed advance health care directive legally must be followed by healthcare personnel and institutions.
2. The person should carefully consider whom he wants to serve as the agent to make decisions for him and support his choices when creating a health care directive or living will.
The agent the person in your care names in his advance health care directive should have several qualifications:
- The job can be emotionally difficult, so it should go to someone who cares deeply about his welfare.
- It should also be someone who is likely to be able to remain physically near him during a prolonged healthcare crisis.
- And it should be someone who has a strong enough personality to stand up to family members, doctors, and hospital personnel if necessary.
- Sometimes a trusted friend will make more objective decisions, or will follow the person's wishes more carefully, than a family member.
Whomever he winds up choosing, he has to discuss the responsibility with that person and make sure she's willing to accept it before naming her in the document.
3. Use sample forms for the advance health care directive or living will as planning tools.
Situations to address
Each individual's advance health care directive should be personalized to reflect his particular wishes. An advance health care directive should address situations such as:
- When (if ever) the person in your care would want artificial life-sustaining treatment, such as during permanent unconsciousness or severe dementia
- Types of life-sustaining treatment he would and would not want, such as artificial nutrition and hydration, surgical procedures, and cardiopulmonary resuscitation (CPR) -- and under what conditions
- Instructions about other medical procedures that may arise given the person's medical history
- Organ donation instructions
- Pain control preferences
- Where he wants his care (at home or at a designated nursing facility, for example)
Documents available online
Generic advance health care document forms are available from many sources, but the forms are designed to be planning tools only. They don't offer a final product -- the forms are meant to trigger but not replace communication between the person in your care (the principal) and the designated decision maker (the agent).
Still, they are useful for getting started. Most state legislatures provide official forms for advance health care directives and living wills. These examples, among others, are available online:
- New York
Similar forms are provided by such groups as state medical and bar associations. For example, sample forms can be found online through the California Medical Association, AARP, and the American Medical Association.
The importance of state forms
- Though there's no single form that must be used for an advance health care directive, an individual should use his state's standard form if it has one. He should also follow his state's signature and witness requirements. For example, most states require two witnesses to the person's signature; some states also require notarizing the document.
- In most states, witnesses cannot include relatives, heirs, medical providers or their employees, or anyone responsible for the patient's healthcare costs. If the person in your care is in a nursing home, some states require a state nursing home ombudsman or patient advocate to witness the signing.
- Once the document is executed, the individual should give copies to his doctors and hospital, the person he designates as his healthcare agent, family members, and other advisors. He should keep a list of individuals and institutions that have a copy of the advance health care directive, in case he ever wants to revoke or change it.
4. Update the advance health care directive or living will based on changing end-of-life wishes.
- Encourage the person you're caring for to revisit his advance health care directive periodically, as long as he's able to do so. His feelings and choices may evolve as his situation changes -- for example, after he's diagnosed with a serious illness, or as he witnesses others going through the end of life.
- People commonly make changes right before a major surgery. He may also change his feelings about who should act as his healthcare agent, or his original choice might no longer be able to take on the job.
- He can terminate or change the advance health care directive as long as he has the mental capacity to do so. If he wants to make a change, he should prepare and sign a new document and have it properly witnessed again; just making handwritten changes on a previous document is not a good idea.
- If he does execute a new document, he should send a copy to every person and institution that has a copy of the previous one, explaining that the new one replaces the old. In most cases, completing a new advance health care directive automatically revokes all previous directives, but it's always a good idea to let everyone know personally.