If you were hooked up to a machine because you couldn’t breathe on your own, and you had no hope of recovering, would you want to keep living? It’s a terrible scenario to envision, but it could happen. And if it did, you’d want to be sure that your wishes were known and carried out. Even Kramer from Seinfeld understood the importance of a trustworthy person to represent him. In one episode, after asking Elaine to be the one to “pull the plug,” Kramer announced that he wanted “someone tough” to make the hard decisions. Although we chuckled at Kramer’s antics, his thought process was nothing to laugh at: Determining your wants and wishes at the end of life and choosing the right individual to make your decisions—medical and financial—are critical for ensuring that your will is carried out.
Real life, though, is no TV show. Decisions to be made aren’t clear-cut. But before reviewing the different documents you should consider, let’s talk about who you want to make your decisions if you’re unable to make them yourself. First, you’ll need to name an individual (or more than one individual) to act as your agent (also called an attorney-in-fact). This person would be able to make all financial and business decisions for you under a Power of Attorney. Second, you’ll need to appoint one or more health care representatives who would make all medical and mental health care decisions on your behalf under a Health Care Proxy. He or she would talk to your doctors, review your medical records, and consent to or refuse medical procedures, for example.
With this in mind, for some of you, your spouse may be the logical choice to take on one or both of these roles. But for others, a spouse isn’t the best person to elect because of the emotions related to such decisions, the age or health of your mate, or the current state of your relationship. For those of you who aren’t married, do you pick the sibling you haven’t seen in five years or your best friend who lives around the corner?
When making this crucial choice, it’s important not to be swayed by family pressures or social conventions. Instead, study your friends and family, and then decide who is most likely to make similar decisions and respect your wishes. Use common sense. Follow your gut instinct. Of equal importance, ask yourself who’s smart enough to ask for help from appropriate sources. You don’t always need a Wall Street guru to manage your financial affairs, but you do need someone who is wise enough to seek counsel before making investments. You also don’t need to name your third cousin once removed simply because he’s the only doctor in the family. Instead, pick an individual who can be trusted to follow your wishes regarding end-of-life care and, as Kramer said, can make the “tough” medical decisions. If you’re unsure about this person now, he or she isn’t the right individual to make decisions for you at any time. If you’re concerned about upsetting someone with your decision, leave a letter explaining your rationale in picking a particular child over another. We understand that this is an extremely difficult and often gut-wrenching determination, but you must make a decision. Failing to decide who will make your decisions results in difficulties for all involved, and it almost guarantees that your wishes will not be carried out.
We can’t emphasize enough the importance of having a Living Will, Health Care Proxy, and Power of Attorney. We agree with Abigail, age 42, who said:
Failing to plan is planning to fail.... I want my wishes carried out, so I’ve planned ahead and selected the individuals to act on my behalf.
Identifying the individuals to act for you and putting it in writing can also remove any family disputes over your care and your intentions. Wendy, age 31, a registered nurse, has seen many situations in which a family bickered over the next medical steps to take until the Health Care Proxy was located and “resolved any disputes over who should be making the decisions.”
There are some important points to remember in selecting your agents and health care representatives. First, your agent and health care representative do not have to be the same person. Second, in addition to your primary agent or health care representative, you should always select one or two successors in case the designated individual dies before you, is unavailable, or is otherwise unable to fulfill his or her duty. Some individuals choose to name multiple agents and health care representatives—for example, two children or a spouse and a child. You can then determine whether they can act individually or if you want them to act unanimously. If you choose more than one individual and you’re unsure whether your selected decision makers can work together, some practitioners suggest including an “arbitration clause” in your documents, which outlines a means to resolve disputes. Our feeling is that if you think your agents and health care representatives can’t work harmoniously, select someone else. In the event of a crisis, you don’t want your agents or health care representatives running to an arbitration panel or the courts to decide what happens next.
With this background, we’ll talk about each document. Then we’ll discuss the importance of talking to the individuals you named in each document to emphasize your wants, wishes, and wills.
The unfortunate case of Terry Schiavo brought to the forefront the importance of Health Care Proxies and Living Wills. Deciding today, while you’re able, who should make your medical decisions if you’re unable and what medical care you want at the end of life is critical. Individuals are passionate about these determinations, even making it clear in unconventional ways that they don’t want to be kept alive in certain circumstances. One 80-year old woman in Iowa went so far as to have “Do Not Resuscitate” tattooed on her chest. Others joke about simplifying Living Wills.
If only Living Wills could be this simple!
Health care documents can be confusing, especially because they can be completed in a number of ways. The Health Care Proxy, Durable Power of Attorney for Health Care, Medical Power of Attorney, and Advance Directive for Health Care—Proxy Directive (we refer to them as a Health Care Proxy) all appoint an individual to act on your behalf. The Living Will and Advance Directive for Health Care—Instruction Directive state your wishes at the end of life (we refer to them as a Living Will). Often there are two separate documents, but they may be combined into a single legal document simply called an Advance Directive. You can have a Health Care Proxy without a Living Will, and vice versa, although a Living Will without someone to make your wishes happen may not be particularly helpful.
Before we discuss Living Wills, we need to consider who, if necessary, will implement your Living Will. It’s your health care representative (the individual named under your Health Care Proxy) who makes your medical decisions for you, but only if you’re unable to do so yourself. As long as you have the capacity and consciousness to make decisions, you remain in charge of your medical care. So why do you need to designate a health care representative? Because there are many moments, even during routine medical procedures, that you may lack decision-making capacity. You could be under anesthesia, suffering from temporary drug-induced confusion, or on narcotic painkillers that cloud your judgment. No matter what the cause of your inability to act, you want your health care providers to know who makes your decisions and whom they may talk to about your situation.
Thanks to HIPAA (the Health Insurance Portability and Accountability Act of 1996) and its privacy rule, your health care provider can no longer reveal information to your “next of kin” gathered anxiously in the waiting area. HIPAA requires that your protected health information remain confidential unless you have authorized a health care representative or other individuals to hear such information. While this can be burdensome, in certain circumstances, it’s beneficial. It prevents strangers or individuals with whom you no longer have a relationship (for example, a separated spouse or a child whom you haven’t seen in 20 years) from learning your condition and attempting to make decisions for you. It also allows you the opportunity to specifically name the person you want to make those calls—your life partner, best friend, or other nonrelative who traditionally would have no “next of kin” rights to act on your behalf—with your blessing.
Along with stating who may act on your behalf, you may also include in your Health Care Proxy what acts your health care representative may undertake for you. For example, you may want to specifically outline that your health care representative may speak with your physicians, direct what medical care you may or may not receive, and determine the best level of care if you suffer from an acute, chronic, mental, or terminal illness and need nursing or other long-term care. These are issues that should be discussed and addressed with your attorney and may be dependent upon the state in which you reside.
The companion document is the Living Will, also known as an Advanced Directive for Health Care—Instruction Directive. Your Living Will is your written directive to your health care representative and your physicians regarding your intentions at the end of your life. It usually states that you intend that no life-prolonging treatment be sought or continued if you’re terminally ill, injured, permanently unconscious, or otherwise unlikely to survive. In other words, Living Wills state in writing, in a format dictated by the state in which you are residing, that you specifically request certain treatments not be continued if you’re in one of a number of conditions. In your Living Will, you should specifically list the treatments you don’t want to receive (for example, cardiopulmonary resuscitation, ventilation, and feeding tubes and fluids), as well as those you wish to receive (for example, pain medication). The Living Will may also include a statement regarding organ donation or your intentions if you’re pregnant. A Living Will should not be confused with a Do Not Resuscitate, or DNR, order. Remember, a DNR order can be issued only by a licensed physician, often after consultation with the patient or the patient’s health care representative and with consideration given to the patient’s Living Will, if any. It’s important to note that the final decision remains yours, so long as you’re able to make such decisions. If you’re unable, the decision belongs to your health care representative with due regard to your wishes as outlined in your Living Will.
Your Living Will shouldn’t be a form you’ve printed off the Internet or a boilerplate document given to you by the staff of the local hospital when you’re being admitted. Your Living Will should reflect your health and circumstances, your wants and wishes, as well as your values and beliefs. Although considering this subject isn’t easy, we believe doing so provides an opportunity for you to create a directive that truly reflects your wants. And because we all have different desires and different situations, a standard form just won’t work.
Clearly, we don’t know today what medical treatments will be available 5, 10, or 15 years from now. As such, a Living Will is a directive, not a mandate, and asks that the decision maker consider your thoughts and desires as well as current circumstances. In most situations, it clarifies your intent and makes it easier for your health care representative to take the necessary actions to fulfill your wishes. For Claudia, age 48, her mother’s Living Will and Health Care Proxy proved invaluable because they allowed her, as health care representative, to request the termination of life support after her mother had slipped into a coma. Without it, her mother could have lingered, hooked to a ventilator with no likelihood of regaining consciousness, for who knows how long—something Claudia’s mother vehemently opposed. The desires of individuals at the end of life, or victims of tragic injuries, are so important that the U.S. Army is examining whether battlefield doctors should have access to soldiers’ Living Wills. Without access to an injured serviceperson’s wishes, extraordinary measures are taken to save lives, even though it was a soldier’s wish not to be kept alive with severe brain damage.
In your Living Will, specificity is of paramount importance. A simple statement of “no heroic measures” is useless. What’s a “heroic measure?” The definition of heroic is “exhibiting or marked by courage or daring.” Clearly, that’s not a very helpful statement to a health care provider. This is why you should avoid simple one-page Living Wills (usually based on a state’s original legislative language) found on the Internet or in stationary shops. We know they come from the statutes of the various states, but these forms are merely the starting point for your decision making. You need to specify exactly what type of medical care you want to receive and the circumstances under which such care should be refused. Your personalized Living Will should mirror the statutory language of the state in which you live to be sure it’s effective under local law—another reason talking to a lawyer is better than just picking up a one-size-fits-all legal form. You should also include a statement that your health care providers won’t be sued for following your wishes.
If you’re religious, be sure to ask your attorney to include in your health care documents language reflecting your particular religious beliefs. The Roman Catholic Church recommends specific language to be added to a Living Will that requests that the Sacraments of Reconciliation and Anointing of the Sick and Viaticum be provided, as well as a statement regarding the Catholic definition of life. Check with your parish or diocese for this language. If you’re Jewish, talk to your rabbi because different branches within the Jewish religion have different views, including the definition of death as it pertains to organ donation. The same considerations exist for Muslims. Again, your cleric or an Islamic scholar will be able to assist you in including language that reflects Islamic law. Protestants have no clear guidelines, although various denominations may provide suggested language.
In Chapter 8, “Medical-Legal Wishes: Defining Capacity, Consciousness, and Contingencies,” we discussed the different, defined points of death. Which definition meets your view? Be sure to include that definition in your Living Will. If you’re suffering from advanced dementia and are otherwise healthy, do you want to refuse all further health care? If the use of a ventilator or respirator for a brief period of time during a chronic illness could return you to an active and healthy lifestyle, do you want to emphatically refuse such treatment? If you’re adamant that you do not want to receive artificially administered nutrition and hydration, this should be spelled out and highlighted in your Living Will. Are you concerned about pain? If so, ask your lawyer to include that you want to receive pain medication, even if this medication will shorten your life expectancy. The following outlines some of the issues to consider:
State the circumstances in which your Living Will should become effective, such as if you’ve received a terminal prognosis, you’re in a persistent vegetative state with irreversible brain damage, in an irreversible coma, suffering from irreversible advanced dementia, or there is no expectation of recovery.
When the circumstances that you’ve outlined exist, list with specificity the medical care you no longer want to receive (such as cardiopulmonary resuscitation, respiratory assistance, and therapeutic treatments).
Make a specific statement that you want to refuse or receive intravenous feeding and fluids.
Avoid general or vague statements such as “heroic measures” or “extraordinary means.”
If desired, include a request that you want to be an organ donor, if feasible, and that all steps should be taken to make your organs available. Today, almost everyone can be an organ donor. The organ transplant team will decide at the time whether your organs can be used.
Include a statement in the event you are pregnant. For example, you could choose to be kept alive as a human incubator if a child will be born, regardless of the child’s prognosis, or only if a medical certainty exists that a nondisabled child will be born. Alternatively, you can request that your Living Will be given full force and effect whether or not you’re expecting—in other words you won’t be kept alive just because you’re pregnant.
A Living Will doesn’t necessarily have to be a document refusing medical care. It can also state that your physicians and your health care representative take all actions necessary to prolong your life. Again, the goal is to provide your decision maker and your caregivers with a clear, written directive of your intentions regarding your medical care. There would likely not have been such protracted legal battles between Terry Schiavo’s husband and family if Terry at least had a Living Will that clearly stated her wishes. A Living Will could prevent your loved ones from struggling with the same issues. Make sure that you or your health care representative discusses the specifics of your Living Will with your providers. It should be placed on any hospital chart. Make sure it’s there every time you’re hospitalized.
A Power of Attorney is the document you’ve probably heard of the most. Chances are, some of you have already signed one, maybe when closing on a house or to allow a spouse to conduct banking transactions for you. Generally, there are three types of Powers of Attorney: General, Limited, and Springing. Both the General and Limited Powers of Attorney are active upon signing, which means that you do not have to be incapacitated or unable to act at such time as your agent under the Power of Attorney seeks to act. This makes many individuals uncomfortable—do I really want someone to have the power to act while I’m fine? As noted earlier, if you can’t trust this individual now, he or she should not act as your agent either now or in the future. Period.
Appointing someone to act as your agent is not to be taken lightly. So why do it? Because there may come a time, during a difficult illness or other incapacity, that you lack the ability to make financial decisions for yourself. Or you could be hit by a bus tomorrow and end up in a coma. Either way, you’ll need assistance writing checks, paying bills, filing your taxes, and making other financial decisions, either day-to-day or long-term. John, a 46-year-old financial advisor, agrees, commenting that Powers of Attorney are both “valuable and necessary.” Without appointing someone to make these decisions now—while you’re still able—your family and friends could be forced to request court involvement to adjudicate the appropriate person or persons to act for you.
If you were to become incapacitated without having a valid Power of Attorney, the courts could appoint a guardian to act on your behalf. This guardian would control your finances and could make all health care decisions on your behalf. Alternatively, a court might appoint a conservator to handle your finances only. Each state has different definitions of the role of a guardian or conservator. Regardless, if there is a court action, a guardian ad litem would likely be appointed on your behalf. This is different from a guardian. (Don’t you love the law making everything so incredibly confusing?) The guardian ad litem’s job is to make sure that you really are incapacitated and that the appointment of a guardian or conservator is the best thing for you. As part of the process, your medical conditions, as well as your assets, would become a matter of public record. These can be both time-consuming and costly proceedings. Because there may come a time that you need assistance, you should be the one to select the individual or individuals to act on your behalf. We cannot stress enough the necessity of having a Power of Attorney, especially if you’ve recently received a less-than-favorable prognosis.
The distinction between the General and Limited Power of Attorney is the breadth of the powers that you give to your agent. A General Power of Attorney is nearly limitless, allowing your agent to do everything you could do, including selling real estate and personal property, creating trusts, resigning appointments, entering safe deposit boxes, and making gifts, for example. As noted earlier, a Power of Attorney is for financial and business decisions only.
A Limited Power of Attorney specifies that only certain, particular acts can be performed by your agent, such as writing checks, making bank deposits, and paying taxes. We believe the General Power of Attorney is best, provided you have a trusted individual to act as your agent, because if you need assistance, why limit the help your agent can give you? If you’re still concerned, talk to your attorney about the best alternative for you given your particular circumstances.
Both the General and Limited Power of Attorney should be “durable.” In other words, the document should specifically state that the Power of Attorney will remain valid even when you become incapacitated or unable to act. Without this, it could be argued that the document ceases to be effective upon such an event—something you’re trying to avoid. Check with your counselor to be sure that your current or any future documents are, in fact, durable.
The third type of Power of Attorney is a Springing Power of Attorney, which only takes effect when you’re incapacitated. Although many think this is the perfect solution, and it may be for some, it often defeats the purpose of executing a Power of Attorney. If the document states that it’s only effective on your inability to act, your agent must now prove to a bank or brokerage firm, for example, that you are, in fact, incapacitated. This may mean, at the very least, provision of doctors’ notes or medical reports. Time and energy are now wasted trying to prove that you’re no longer able to act. It’s likely that many institutions will not honor such a Power of Attorney. (We’ve seen it often.) As such, we have serious concerns regarding such springing documents.
With that said, you should discuss any apprehensions with your lawyer. Let him or her know exactly what powers you want your agent to have and any other issues that worry you. If you’re nervous about providing a fully active Power of Attorney to your agent at this time, your counselor may be able to help you. Some attorneys will hold all of the signed documents in their files pursuant to a Holding Letter, in which you ask your attorney to keep the original documents in his or her file until such time as the agent provides evidence of your incapacity to your lawyer.
Documents are critical components of ordering your affairs. We believe that communicating your wants and wishes to your family and friends is of equal importance.
We’ve witnessed such conversations, which sometimes include a great deal of humor. Take Betty, age 42, recently diagnosed with cancer. She told her sister, after she signed her Health Care Proxy and her Living Will, that she wanted her to do everything possible to keep her alive. “Don’t pull the plug,” she mandated, “unless I’ve lost a limb; then go ahead. I’m too superficial to live without all of my external parts.” We agree, Betty’s wish is a little superficial. But it’s what she wants. She took the time to clearly communicate her wishes, not just in writing, but in a conversational statement that made it clear to her sister exactly how she feels.
We acknowledge that these are incredibly difficult issues to discuss. We can’t tell you the number of people who refused to complete our simple survey on the subject because it was “too emotional,” “too morbid,” or “too sad.” That’s part of why we’ve written this book: to provide a catalyst to discuss these subjects. We encourage you to have a heart-to-heart with your agents, health care representatives, and health care providers. Tell them exactly how you feel. Be specific. Continue the dialogue over time, and be sure each individual truly understands. Sophia, age 77, has a Living Will, but she has also made it emphatically clear to her husband and sons that she dreads a long, lingering illness and “wants the opportunity for a quick death.” As Sophia’s husband noted, “she is unyielding on this point, and we understand her wishes.”
Harold Ivan Smith, in his book Finding Your Way to Say Goodbye, emphasizes the importance of clearly stating your wishes and also doing so in writing:
Words written on a paper are like money in escrow. Putting your wishes into writing is a gift to your family. Too many families get ‘ambushed’ in hospital corridors and family lounges because the patient did not clearly verbalize wishes and did not dialogue with loved ones about those wishes.
Make sure this doesn’t happen to your loved ones.
It’s also important to recognize the horribly painful and emotional decision that you’re asking your health care representative to make. When 40-year-old Cindy’s aunt was dying of liver failure, her brother was charged with making decisions on their aunt’s behalf; it was “a really difficult, life-changing, family-tearing time for him.” Virginia Morris writes in Talking About Death Won’t Kill You:
Think not just about safe, sterile subjects like the medicine and legalities and ethics involved, but about death, the big picture. Death with a capital D. Because when you sign a living will or make a promise to a loved one, you’re not talking simply about using a medical procedure or refusing it. You’re talking about finality. About mortality. About pain and disease and decline and final good-byes. It is easy to say, “I would never want that procedure,” but have you tried to put yourself inside the mind of a dying person? Have you ever really imagined what it is like to make life- and death decisions for someone whom you can’t live without?
Have a family meeting to discuss your views. Let your health care representative know that he or she shouldn’t feel guilty for carrying out your wishes. Assure this person that making the “tough” decision is the ultimate act of love. And keep telling him or her that.
Jamie, age 58, understands how difficult it is to fulfill the wishes of loved ones:
You just have to be strong enough to abide by their wishes. It would have been easier if I’d been making the decision for myself. My parents were wonderful people, I never saw them do anything wrong, they took care of me as a child and protected me from harm. How do you say ‘yes’ to turning off life support? It was the hardest decision I ever made in my life, and if I knew it would be my decision, I would have discussed it more with them.
Despite being a nurse, Elise, age 42, struggled when faced with a similar decision:
For many years I thought I ‘knew’ what I would do if faced with that situation and then suddenly when it was right in front of me with someone I was close to, my emotions really took over, and I struggled to figure out what the right thing was to do.
It’s never easy.
We’ve all heard the anguished stories of final days: Loved ones placed on respirators, kept alive by artificial means, or given unwanted food and nutrition. People often place blame on the hospital, nurses, or doctors. We believe this blame is misplaced. Physicians, health care providers, and emergency personnel are trained to save lives. It’s their job. It’s the responsibility of you, or your health care representative, to refuse medical care. You or your representative must be proactive. If 9-1-1 is called to the home of a terminal cancer patient, the paramedics will perform all acts necessary to resuscitate. In a moment of crisis, a health care provider will not waste time looking through a chart to determine if the patient has a Living Will and then read through several pages of “legalese” to determine what to do next. If it’s what you want, request a Do Not Resuscitate order if hospitalized and the end of life is imminent (see Chapter 8). Don’t request emergency care. There are options. Discuss them with your physician to determine how best to act.
You need your health care representative to fight for you, to refuse unwanted medical procedures, and, perhaps, to make a determination that ends your life. You need someone strong, someone who will make the decisions you want, and someone who is able to set aside his or her emotions and step into your shoes. Or if you want every possible action taken to keep you alive, you want someone who is willing to fight your insurance company, request alternative and perhaps unorthodox treatments, and to find the next best course of treatment given your situation.
We’re sure that you’ve sensed the overriding theme of this chapter: You have the power to decide who will and who will not act on your behalf, as well as what level of care is right for you. They’re important decisions. And they’re your decisions. Remember, don’t be concerned about what others will think or if feelings will be hurt. You need to think of yourself, your affairs, and your care and not be concerned with anyone else. In the final analysis, you need to do what’s right for you. We know it’s difficult, and we wish we could work with each one of you. Just be comforted that in deciding who will act on your behalf, you’ll make it easier on your family and friends and ultimately on yourself.
Prepare a Health Care Proxy.
Prepare a Living Will—add additional instructions important to you.
Prepare your Who-Can-Know-What chart.
Share your Health Care Proxy, Living Will, and Who-Can-Know-What chart with all of your providers.
Prepare a Power of Attorney.
Communicate your wants, wishes, and wills with your family, friends, agents, health care representatives, and providers.