Decision Making for End-of-Life
My wish for you is that you never have to be in a position for making end-of-life decisions for a loved one. However, in reality this happens quite often and it helps if you’ve prepared in advance. In particular, you need to ask yourself if you’ve taken two important steps, as follows:
- If your family member needed to make this decision for you, have you made your wishes known?
- And have you taken the important step of documenting your decisions and named someone who has the authority to make those decisions for you when the time comes?
Failing to do accomplish both of these steps means you’re at risk for a bad result, and you have placed an unjust burden on your family. You can fix this by preparing in advance and signing the appropriate legal documents, called end of life directives. Generally that means signing for yourself a health care power of attorney and a living will (both of these can be combined into one document). In addition, you may want to have in place an out-of-facility Do Not Resuscitate Order (DNR) signed by a physician. This allows you to leave detailed instructions about the type of care you would want if you become terminally ill, or are in a permanently unconscious state, or suffer from advanced dementia.
Keep in mind that these documents are not “set in stone” after you sign them. You can always change them later. Also, you aren’t giving up the ability to make your own medical decisions as long as you are capable of doing so; you are simply putting into place the groundwork needed to carry out your wishes if the time comes when you can’t make or communicate your own medical decisions.
Health Care Power of Attorney
Signing a Health Care Power of Attorney is the first and most important step. This names someone (your Health Care Agent or Agent) to make medical decisions if you are unable to make or communicate those decisions yourself. It never takes away your own ability to make your own decisions, as long as you are capable of doing so. You are able to express your wishes about care, and you are able to designate the Agents you want to act on your behalf. You can name a primary Agent, and also name backup Agents in order. then is similar to If an individual becomes incapacitated, it is important that someone have the legal authority to communicate that person’s wishes concerning medical treatment. It will be up to the attending physician to determine when you are no longer able to make or communicate your own wishes.
In general, a health care proxy takes effect only when the principal requires medical treatment and a physician determines that the principal is unable to communicate his or her wishes concerning treatment. How this works exactly can depend on the laws of the particular state and the terms of the health care proxy itself. If the principal later becomes able to express his or her own wishes, he or she will be listened to and the health care proxy will have no effect.
Your health care power of attorney will include instructions on what type of care you would like. For example, you could give directions to refuse or remove life support in the event you are in a coma or a vegetative state; alternatively you could instructions your Agent to use all efforts to keep you alive, no matter the circumstances. You can also give the Agent the broad authority to make decisions that the Agent believes are appropriate, after considering your wishes. It is important to understand that the Health Care Power of Attorney can apply to situations besides the end-of-life decisions. For example, if someone is heavily medicated but medical treatment is needed but it’s not life-or-death, then the Agent has the authority to make those types of decisions, too.
Naming Your Agent
You need to carefully consider who will be your Health Care Agent. You want someone who will respect your wishes. In addition, if your family members might disagree among themselves about end-of-life decisions, then you need to name the one who you feel will be able to act in accordance with your directions, to avoid conflicts and even legal actions that otherwise could erupt.
Generally this will be a family member. Typically the spouse is the primary Health Care Agent, followed by a child or other trusted family member or friend. Before executing a health care power of attorney, you should talk to the person(s) you intend to name as Agent, about your wishes for medical decisions, and especially withdrawal of life-sustaining treatment.
Preparing Your Health Care Power of Attorney
There is a form version of the Health Care Power of Attorney, in the North Carolina General Statutes. Many hospitals and nursing homes also provide forms, and you can obtain them from some public agencies, too. However, typically you are best served by discussing the Health Care Power of Attorney by discussing it with an attorney who is skilled and experienced in elder law matters.
You should keep the original of the document, and give a copy of the it to your agent. You can also tell the agent where the original document is. You can also give a copy to your physician for your medical records. In addition, you can register your health care power of attorney through available on-line registries, and with the North Carolina Secretary of State’s office. One of the online registries is called, “Docubank,”
HIPAA Privacy Release
There are strict new health care privacy rules in force, making it more important now than ever that everyone consider authorizing your family members to access to health care information about them. Under the health care privacy provisions in the Health Insurance Portability and Accountability Act (HIPAA), doctors, hospitals and other health care providers may not freely discuss your status or health with your spouse or other family members — unless the provider has from you a signed consent form.
That is easy to do if you’re able to give consent yourself. However, what if you’ve had a stroke or heart attack and you can’t give consent? Then you need a specific blanket HIPAA Medical Privacy Release to give your family the ability to discuss your care and care options with the health care provider. Remember: a general power of attorney for financial matters will not suffice. In addition, it’s best to have a HIPAA Release that is separate from your Health Care Power of Attorney. Since the Health Care Power of Attorney only becomes effective when your physician says, your family needs the HIPAA Release that contains no such contingencies and is immediately effective.
Your Living Will
Living Wills are a limited form of advance directives, which give instructions regarding end-of-life treatment. The Living Will states under what conditions life-sustaining treatment should be provided or discontinued. If you would like to avoid life-sustaining treatment when it would be hopeless, you need to sign a Living Will, or include the end-of-life directions in your Health Care Power of Attorney. Like a Health Care Power of Attorney, a Living Will takes effect only upon a person’s inability to make or communicate his or her own decisions..
A Living Will is not a substitute for a Health Care Power of Attorney; you should still name an Agent under the Health Care Power of Attorney. The Living Will merely states your wishes, and it does not say who you want to carry them out or make decisions for you. It simply directs the withdrawal of life support in instances of terminal illness, coma or a vegetative state.
Do Not Resuscitate Order (DNR)
A Living Will is different from a “do not resuscitate” order (DNR). A portable DNR is signed by a physician, and it says that if you are having a heart attack or stroke, medical professionals may not try to revive you using CPR. It would not apply if you merely fell, or if you had a car accident. This is not something that can prepare for yourself, and your lawyer can’t prepare it for you either. You would need your doctor to sign this, and only after careful consideration. Everyone needs a Living Will (either on its own or as part of a Health Care Power of Attorney). However, a DNR should be used only for the very elderly and/or frail patients for whom it wouldn’t make sense to administer CPR.
MOST Form: A New Approach
Another form of physician order is the Medical Order for Standard Treatment, or “MOST” form. This gives broader directions about medical treatment than the DNR.
A MOST is intended primarily for patients with an advanced chronic progressive illness or are seriously ill with limited life expectency (of a year or less). Although a MOST doesn’t apply as much to patients with stable medical conditions or for those who have a long life expectancy, it may be used for a patients who wants to clearly define their treatment preferences for end-of-life care. No one is required to have a MOST. It can be difficult to find a physician who is willing to prepare the MOST form, and it is not in general use in North Carolina.
For more information on end-of-life decision-making from the North Carolina Bar Association, click here. The North Carolina Medical Society has additional end-of-life resources available online here, including information about DNRs and MOST.