One problem with advance directives is that often they are not honored. It is critical that you have a good advocate who demands that you get only the care you want and do not get what is not wanted, not only at end of life but at any time you encounter a medical institution. You will need to choose someone who meets the legal requirements to act as a health care or medical agent, which some states call a proxy, surrogate, or representative. I call this person your “advocate.” State requirements differ greatly, so be sure to use your state’s forms for naming a health care or medical agent, not generic documents like the “5 wishes.”
I lead a four-hour training on this topic, which, of course, I can’t encompass here, but I lay out some ideas from it here. I advise that it is important to review your directives at least annually and to again sign and date them, thus indicating consistent, rational thought over a period of time.
To be a great advocate –
• With the one you are advocating for, clarify specifically what is wanted and not wanted regarding medical care.
• Have patient’s living will, legal medical and mental power of attorney, legal/financial power of attorney, and other documents complete and easily available to you, and updated every year.
• Carefully watch nurses and doctors for medications and treatments they want to use. Monitor tubes, dosages, etc. . . . Speak up if they are not in sync with the patient’s wishes.
• Remind staff every day to keep a copy of patient’s directives on top of or at the front of patient’s file/record.
• Be assertive and persistent if necessary. Talk to the hospital patient advocate or the hospital administrator if necessary. If need be, going to court is an option.
• Remember that the agent may remove a patient from a hospital or refuse a treatment, if such action is provided in the patient’s directives.
• If you get opposition, suggest you want to talk to your brother-in-law, the malpractice attorney — even if you don’t have a brother-in-law.
• In decision-making discussions, don’t include family or friends who are not supportive of the patient’s wishes.
Here are some factors that may help or might hinder the process of making advocacy decisions: the advocate’s characteristics and life experiences, the coping strategies of both the patient and the advocate, religious community support, the patient’s spiritual beliefs, the advocate’s social network, support for the patient’s and the advocate’s decisions from family and friends, the advocate’s skill at working toward consensus, the advocate’s full knowledge of your wishes and preferences, the advocate’s ready availability, the nature of the recommendations from the care provider, and respect for the patient’s decisions from the care provider.
Factors that may hinder the process are too many care providers involved, lack of clarity about who is in charge of medical care, confusion about your preferences for medical care, the advocate or the patient being overcome by emotion, family conflicts, competing responsibilities, financial barriers, and the advocate’s own health or other problems at the time she is needed.
An advocate should
• meet your state’s requirements for serving as a health care or medical agent.
• be thoroughly familiar with your wishes: your physical, emotional, financial, and spiritual state. Choose someone who will talk with you now about your wishes, who will understand what you want and your priorities about health care, and who will faithfully do as you ask or have previously stated when the time comes. Communicate often and give specifics about every six months.
• live near you or easily travel to be with you quickly in an emergency, if needed. A person who lives far away could be appointed if a secondary advocate would be available immediately and serve as advocate or agent until the primary appointee is available.
• be introduced to others involved with your care.
• have original documents signed in blue or red ink (to prevent confusion with copies).
• have the ability to handle conflicting opinions from family members, friends, and medical personnel. Disagreement is not uncommon.
• not be a relative, but someone with whom you implicitly trust as a true confidant (this is truly life or death).
• have people skills, an attractive demeanor, geniality, and unshakable perseverance.
• be articulate, assertive, and tireless – having your wishes honored can be quite a struggle.
• be able to refuse futile medical efforts, exhibit determination and composure when under stress, and not capitulate when confronted with medical staff’s reluctance or objections to having your wishes honored. Your advocate must be strong enough to overcome the possible unresponsiveness of a doctor or medical institution.
• be capable of being unrelentingly tough if need be. It can be quite an uphill struggle to make sure you get what you want and do not get what you do not want from medical treatment. Sometimes your advocate must be unyielding with a system that is geared to keep you alive, no matter what.
• be someone with whom you have an inviolable trust. Integrity is critical. After all, these can be literally life-or-death decisions.
I suggest above that you consider appointing someone other than a close relative for several reasons. A friend may be able to be a bit more objective in honoring your wishes. For example, I know two women in Tucson, each of whom had served as her mother’s advocate. Although each had faithfully followed her mother’s wishes by withholding various procedures and treatments, these loving women feel guilty to this day about having been complicitous in their mothers’ deaths. This is unwarranted guilt, but it haunts them still. Moreover, if it is a spouse who has been adoringly married for fifty years, that spouse may find it very difficult to let the beloved partner die without what may be futile medical interventions. And there is the more obvious reason that an immediate relative who is not so loving may have the ulterior motive of standing to gain financially by hastening the death.
Finally, your advocate should be able to
• Ask and Listen carefully: won’t hesitate to ask questions of the family, nurses and doctors – about prognosis, how long to live, pain control, alternative treatments, etc.
• Be prepared, know the patient well, and review the advance directives.
• Stand back to get the broader picture, e.g., the family’s culture or religion, and know how to talk to a death-phobic family about imminent death.
• Act strategically; i.e. Don’t just blurt out — think through your goal, figure out how you plan to achieve it, be diplomatic and stay with your goal.
It cannot be over-emphasized that having a good advocate is essential to achieving a good death, whatever that may mean to you.
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John Abraham is the author of “How To Get The Death You Want — A Practical and Moral Guide” (2017, Upper Access Press) and on Amazon
Contact: JohnWithFEN@earthlink.net
Web site: www.DeathAndDyingHelp.com
In principle, I agree that ” In decision-making discussions, don’t include family or friends who are not supportive of the patient’s wishes.” But it is important to let them know, explicitly and strongly, what the patient’s wishes are and are not and insist they respect these choices. Misguided and “well-meaning” interference is more effectively prevented ahead of time than during a medical crisis.
I have also obtained a POLST (Physician’s Orders for Life Life Sustaining Treatment) from my physician. I carry my Advance Directive and my POLST with me at all times. My agent/advocate is lawyer.
John has done a great job of delineating the qualities needed in a Proxy/advocate. At FEN, we often hear from people who are elderly and alone – they simply do not have anyone who can serve as a Proxy to ensure their directives are carried out. Looking at the skills and commitment needed for the job, it’s not surprising that it can be hard to identify an individual willing to volunteer. And demographics make it likely this problem will increase in the years ahead. Perhaps it’s time some institute of higher education considered providing a Certification program for those willing to serve as a paid, professional advocate.
Here in Tucson we have several volunteers who may serve in this role. All have been through 4 hours of “Advocacy Training”– some more than once. I do so, but can only take on 3 or 4 people at any given time. Two years ago I called all “nurse advocates” listed in our phone book, none of whom would assume this task. Those advocates simply help one navigate the medical system. A few attorney’s may assume the role for compensation but it is hard to believe that an active attorney will find/make the time to be with one as much as is needed. Maybe Final Exit Network could undertake providing certification for those interested.
I completely agree with Gary’s reply that is important to vigorously discuss one’s wishes with family and try to win them over, which is not always possible. The time to have the discussion is now, not when one is failing.
My only comment about John’s advice is in regard to his instruction to rely upon one’s statutory (State approved) forms in order to avoid any confusion should any opposition to the directive arise. The problem with that is some of the statutory forms are written in such a way that they do not recognize the full panoply of rights that are Constitutionally protected, such as the right to refuse all forms of treatment–including food and fluids provided by mouth–under any circumstances, not just when death is “imminent” or if one is permanently unconscious. For that reason I have long recommended the use of an idiosyncratic advance directive, preferably an durable power of attorney for healthcare. It needs to be stressed that there is no obligation to use the statutory forms as long as proper witnessing and/or notarization procedures are followed.