Let’s face it, legal planning for incapacity is not a particularly fun or glamorous topic to discuss or even think about. But, it is an extremely important subject to address if you have a progressive disorder, such as HD.
I strongly believe that everyone, disabled and nondisabled alike, should consider legal planning for incapacity if any of these following questions hit home for you:
1) If I should be unable to articulate my needs or otherwise make my needs known because of physical or cognitive disability, do I have any wishes, desires, or preferences about my health care that are important to me?
2) Am I concerned about how medical decisions will be made if I become disabled?
3) Do I want doctors to do all they can do to prolong my life if I am seriously ill?
4) Does my family (or significant others) have any idea about my preferences?
5) Does my doctor know about my preferences?
Making your wishes known needs to be in writing, usually in the form of a Living Will (also known as a Directive to Physicians) and/or Durable Power of Attorney for Health Care (DPAHC).
These documents essentially spell out your desires to have life-sustaining procedures withheld or implemented, such as whether or not you want to have a gastric tube inserted if you can no longer swallow food safely, whether to prolong life with the use of life-sustaining machines, etc.
They can assist in taking the burden off the family to try to guess or mind-read what your desires are. They give you a voice, and a rather strong one, if you cannot speak for yourself, and provide greater assurance that your preferences are honored.
The basic difference between the Living Will and DPAHC is that the Living Will tells your physician(s) about your desires pertaining to prolonging life in the event of serious or terminal illness. This document empowers doctors to stop doing all they can with life-sustaining procedures. It does not tell them what you do want.
The Durable Power of Attorney for Health Care allows you to designate someone to make health care decisions on your behalf, in the event that you cannot. This legal document essentially gives directions to your designated agent about your health care preferences.
You have the option to designate anyone of your choice, a relative or non-relative. It is essential, though, that the person you designate as your agent willingly consent to this and that you clearly discuss your health care preferences with them.
The DPAHC can be as specific as you like, or it can be very general, relying on the judgment of the agent you’ve nominated. It is also a good idea to nominate one or two alternate agents to serve as a back-up, if necessary.
The DPAHC is always revocable and changeable, and is put into effect only if you are not able or competent to make your own health care decisions.
It is not necessary to have an attorney draft these documents for you, although many people choose to have a legal consultation to clarify concerns and questions they might have. Printed forms are available that meet the requirements of California law, but note that they may not be honored in other states.
While the focus of this article has been on legal planning regarding medical decisions, there are additional legal planning measures to take involving financial matters and other personal affairs, including completing a Durable Power of Attorney for Asset Management/Finances and establishing a Revocable Living Trust.
If you choose to consult with an attorney, it is advisable to consult with one who is familiar with health care, disability and long-term care issues to assure that your particular needs are appropriately addressed.
You can order the DPAHC forms from the California Medical Association at (800) 882-1-CMA, or consult with your medical care provider (doctor or hospital) about obtaining forms. I have also been informed that Kaiser Medical Centers have forms available for members, or you can purchase both forms from stationery stores.
Legal planning for incapacity can be a difficult topic to discuss and pursue and requires a great deal of sensitivity on the part of all family members, friends, and health professionals.
I cannot emphasize enough how important it is to approach this topic, while remembering that it is not simply a matter of filling out forms, but a deeply emotional issue.