We hear about Living Wills all the time, so let’s begin there.
Essentially, a Living Will is a written legal document that specifies your choices regarding your medical treatment when you are no longer able to understand or express informed consent. Simply stated, it is a mechanism by which you tell physicians and other caregivers what you want and—most essentially—what you don’t want.
Important: these instruments are not just for the elderly or someone already in long term care. Unforeseen end-of-life occurrences can occur at any age. If you are legally an adult, you should have an Advance Directive but need at a minimum a Living Will. Though particularly central for the terminally ill, they are critical for all of us; we never know what situations are before us. Just think of the daily accounts of traffic fatalities.
In the absence of instructions from you, physicians are obligated to make medical decisions based not only on their judgment but also on established protocols, community norms and hospital policies. Without your guidance, physicians will often be compelled to take an action that is not of their choosing. This may well include long-term maintenance on ventilators, dialysis, feeding tubes etc. That’s a bad scenario.
These choices should not be taken lightly. Your Living Will can tell physicians in the emergency room what you want to happen in case you cannot communicate. But it can also tell them what you do not want to happen. Both are important.
Think carefully as you prepare these documents.
As important as it is, your Living Will is but one of three legal instruments that together constitutes an Advance Directive.
Your designation of someone you trust as your Healthcare Surrogate or Proxy is important since that person is legally required to make certain the choices you made in your Living Will are being followed by your healthcare professionals. It is preferable that you pick a person who has a measure of healthcare experience and understanding. In addition, that person should have agreed to being chosen and have had serious discussions with you as regards potential subjects such as intravenous hydration, forced feeding, pain medication, diagnostic and treatment procedures, and resuscitation.
Lastly, and particularly if your state’s law requires, another individual should be identified as the designated Power of Attorney, someone that you have chosen to decide on the myriad of non-clinical issues that will undoubtedly arise, such as referral to an assisted living facility or perhaps hospice.
In both categories, alternative individuals should be chosen, allowing for changes in circumstances. In the absence of such individuals, a court may appoint someone. Better you do so yourself.
It is particularly important for those individuals who are experiencing early-stage memory loss yet still are mentally competent to make their choices known. This cannot happen in the late stages of dementia or Alzheimer’s. By their very nature, Living Wills and Advance Directives must be completed before you may be declared incompetent to do so.
As understandable as this sounds, many people are hesitant to approach these sensitive issues. Instead, they rely on justifications like, “My children will know what to do” or “My doctor knows what is best for me.”
Both of these may well be true but without the force of these documents, their hands may well be tied. This is especially true of Do Not Resuscitate or DNR decisions. Individual states have express directives for how DNR decisions are to be structured and applied. Ask your attorney or public healthcare advocate.
Off the shelf and Internet Living Wills center on those end-of-life issues which characteristically relate to people in a terminal condition or permanent vegetative state. They often do not address the many health care decisions that need to be made about non-clinical issues such as where the individual should be placed for care and who has the responsibility to keep relatives and others informed within the requirements of HIPAA regulations. This is the responsibility of the Power of Attorney (PoA) and becomes significantly important in the case of memory loss where the affected individual may be in otherwise good health.
How these legal instruments are applied often require clarification. Both the Surrogate and Power of Attorney must know the patient’s wishes thoroughly and be able to demonstrate forethought when actual health care decisions need to be made.
Surrogates do more than make decisions in conjunction with doctors and others. They also function as an interpreter for non-experienced family members.
Though state laws differ regarding Living Wills and Advance Directives, in general most states recognize legal instruments originating in other states. The common practice is that the locale where treatment is being performed generally is held to be primary over where the Living Will was written. Think medical marijuana, assisted suicide, etc.
In the absence of a formal document, oral discussions with healthcare providers do have merit irrespective of the “death-panel” fear mongering claims. Recognizing our litigious nature, it would largely be problematic for a physician to over-rule family members. More reasons to make your wishes known in advance.
It is generally recommended that these three documents be prepared and signed together. Copies should be given to your primary care physician as well as family members. It is essential that you discuss your decisions with your family. What your wishes are should not come as a surprise to them should situations arise where the living will is used. Finally, if admitted to hospital, a copy should be available on your chart and noted.
Properly prepared and witnessed and notarized, these documents have the full weight of law. They cannot be changed by families or PoA’s except under extraordinary situations. It is not uncommon for family members to differ on how they perceive your treatment. The law is on your side. When you are no longer capable of making your own decisions, your Health Care Proxy or Surrogate must always diligently act in your best interests to follow any health care wishes you’ve expressed in your documents irrespective of what family members may wish.
The American Bar Association has established a Commission dealing with legal problems of the elderly (www.abanet.org/aging). It includes a “Tool Kit for Health Care Advance Planning” as well as the My Health Care Wishes App, available from Google Play and the Apple App Store.
by Thomas Ignatius Hayes