When Sarah J. was 39 years old, her mother endangered her health by accident. Sarah developed severe, life-threatening blood clots after surgery to repair a broken leg, and was hospitalized. She was in so much pain that she was sedated while receiving intravenous blood thinners. Unable to respond to the doctors caring for her, Sarah was considered legally incapacitated. The hospital notified law enforcement, who conducted a search for her next-of-kin and located Sarah’s mother, Janice, three states away. Janice flew to Sarah’s side and immediately began to make medical decisions on her behalf as the hospital requested. One of the first decisions Janice made was that Sarah must remain hospitalized for at least a week. She told Sarah’s doctor: “Sarah’s house is too hot in the day but drafty at night, and it’s so filthy I need to sterilize everything before I can take her there. You must tell her insurance company she has to stay in the hospital.”
In fact, Sarah loved her little house that was sunny and bright, not “hot.” She loved the big old-fashioned windows that let in the evening breezes her mother considered “drafty.” And the “filth” her mother perceived was merely the normal scattering of cat toys and dog bones associated with beloved pets who brightened every moment of Sarah’s life and were her family. She’d had many health problems as a child and had been hospitalized several times. Her home environment had been sterile and unloving. When she’d first come to the hospital with blood clots, she’d thought about how essential it was to get home again soon. She knew her precious animal companions and beloved little home would help her recover faster, and that even a few days in a hospital would trigger depression and endanger her healing. But now she was unable to speak for herself, and her mother was recreating Sarah’s miserable childhood experience. The doctors had told her mother that Sarah had only a 50-50 chance of survival, which scared her into behaviors that actually tipped the scales against Sarah’s chance of successful recovery and further endangered, rather than protected, her life.
Sarah loved her mother. But there was a reason she had taken a job a thousand miles away from her childhood home. Now, helpless, she was back in a situation she’d have done anything possible to get out of, had she not been incapacitated.
Fortunately for Sarah, her doctor had treated her for several years. She had told him about her childhood health problems and the lengthy hospital stays that had caused her so many negative emotions, and she’d told him how important her little home, her friends, and her pets were to her well-being. So as soon her pain medications were decreased enough that she could respond, he called her on the phone. He knew her mother would be standing in Sarah’s hospital room and that he had to bypass her to find out what Sarah really wanted. He told her what her mother had instructed him to do, and then said he wondered how she felt about it now that she was able to think for herself. Sarah didn’t have to think even a moment. “I want to go home,” she said firmly. “Dizzy or in a wheelchair or with one of my friends to stay with me for a few days. When can I do that? How soon can I leave?” He agreed to discharge her the next afternoon, as long as she could find a friend to stay with her for a time. Meanwhile, they agreed, Janice could help out. As they talked, Sarah was able to see that Janice could not control what happened as long as Sarah could speak for herself.
When people are laid up after an accident or serious illness, it’s often hard for them to speak up for themselves as firmly as they wish they could. So it’s easy for their family members to recreate old patterns of relationship that may be unpleasant or even unhealthy, which slows recovery. But if a single or unmarried person is incapacitated and can’t respond to medical personnel caring for them, next-of-kin must be contacted. So it’s usually a parent who winds up at the person’s bedside, getting test results, talking to doctors, and making medical decisions for them. Even if a Significant Other or good friend knows far more about what you want if you are incapacitated during a medical emergency, they have no legal right or authority to even talk to your doctor.
Unless you have prepared in advance.
You have medical insurance to cover your bills if you have a medical emergency. You need Incapacity Documents to protect your health, your well-being, and even your home in the same situation. They’re not expensive, but they have to be properly executed and notarized to protect you. And you cannot rely solely on the medical community to provide them, though the crisis of not having such papers is so serious that hospitals are experimenting with ways to provide at least some of them to patients on their own.
Without Incapacity Documents, you literally cannot choose who makes decisions about what tests, treatments, procedures, and even surgeries you have if a ski accident or car wreck makes you unable to speak for yourself. Hospitals can’t make these decisions on their own, so if you don’t have Incapacity Documents and they cannot find your next of kin, the court has to appoint a legal guardian to make decisions for you while you’re incapacitated. It’s a terrible situation if your life is hanging in the balance. But that’s not the only problem. Without Incapacity Documents, you could go home after a lengthy recovery to discover that “home” has fallen apart just when you needed it most. This simple packet of documents protects your home too, as well as any pets or children who depend on you.
So what’s in a package of Incapacity Documents? And how do they protect you?
- Health Care Proxy. This document appoints one or two people that you choose, who will make health care decisions for you if you are temporarily incapacitated.
- Some hospitals and physicians now offer Health Care Proxy forms or automated systems, but these forms are filed only with the specific hospital system that offers them. That means if you are unconscious and taken by ambulance to a hospital in a different system, or if you have an accident while out of town on work or vacation, your prepared Health Care Proxy will not show up when your name is put into the admitting hospital’s system. In that case, law enforcement will be forced back to the default position of finding your next of kin, who will be given that authority. Your plans will be invalidated by accident.
- Whether or not you file a Health Care Proxy with a hospital or doctor’s office, it’s essential to download an Emergency Contact Card and fill it out with the name and contact information for your Health Care Proxy. Put the card immediately behind your drivers’ license, in your wallet, because law enforcement officials will discover it in that location and respond to the information it provides. It’s a good idea to make sure your attorney has a copy of all your Incapacity Documents on file, and to put that person’s name and contact information on the ECC as well. Then if law enforcement cannot reach your Proxy, they can get a copy of your Health Care Proxy and other documents sent to the hospital right away.
- Think carefully about who you want to choose as your Health Care Proxy, and talk to the person about what sorts of things you’d expect from them. Whatever you do, don’t simply put someone’s name and phone number on a Proxy form without talking to them first, and don’t let anyone talk you into doing that to “get something done quickly.” Get it done, but do it You will be counting on your Health Care Proxy in a critical emergency that might threaten your very life. An attorney has the time and knowledge to advise you as you think through your own situation so you can plan.
- Don’t put this off because you figure Sarah’s problem is not that common. It is. Unmarried people make up the fastest-growing part of the U.S. population. According to the US Census Bureau, nearly 3 out of 10 American households now consist of ONE person — a person who is not married and who is also living alone rather than with a roommate, significant other, or child. Almost half of all Americans have never been married, are divorced, or are widowed, as compared to 1960 when nearly 3/4ths of Americans were married and had a spouse to serve as their next of kin in a medical emergency. Further, people under 40 are intentionally choosing to defer and delay marriage. As a result, in a number of states, 65%-75% of all people between the ages of 18 and 39 are never-married singles. Every one of these people faces a potential crisis if incapacitated in a medical emergency, and very few of them have prepared the Incapacity Documents that would protect them then. As more people choose to be single, to live far from family, to travel extensively, and to be physically active — for so many good reasons — this problem is becoming a national crisis. Please share the word with other singles you know, about how they can protect themselves in a medical emergency. Insurance alone is not enough.
- HIPAA. A HIPAA release is a signed form that gives someone permission to access your medical records. You have probably seen and signed one of these forms in your doctor’s office so it has permission to share information about you with hospitals and testing labs. It’s essential that the person you designate as your Health Care Proxy signs a HIPAA release so the doctors who are treating you can give that person all the information they need to make sound decisions on your behalf.
- Advance Directive or Living Will. The name of this document depends on the state in which you reside. In Massachusetts, where I practice, it is called an Advance Directive. Ideally, we all hope your Health Care Proxy never needs to refer to your Advance Directive when talking to your doctors, because this is the document that stipulates what sorts of life-saving treatments you may or may not want to have. For instance, some people feel very strongly that they would not want to live many years in a vegetative state, without any hope of recovery. Others feel just as strongly that they want every chance at any miraculous future recovery they might have. People sometimes confuse this document with the Health Care Proxy document itself. But while your Proxy may be the person who informs medical personnel about the contents of your Advance Directive, it is the AD itself that spells out your wishes in writing so that everyone knows what you do or do not want done. Most hospitals believe they are ethically required to do everything they can to prolong and preserve your life, by any means necessary, unless you have an AD to direct the Proxy and hospital concerning your end-of-life wishes. If preparing such a document disturbs you, you can do it at a later date. Don’t skip getting your other Incapacity Documents just to avoid thinking about The Big “What If”. At the same time, please remember that very few incapacitated patients have this document when they unexpectedly need one. Hospitals are increasingly desperate to find ways to get the public to deal with what’s becoming a growing crisis of having to make crucial decisions for patients who cannot say what they want done and never wrote it down while they had the chance.
- Durable Power of Attorney, or POA. Whereas all the other Incapacity Documents protect your health and well-being, the POA protects your home in your absence, while you are incapacitated and recovering. Even if your next of kin comes to your bedside to make your medical decisions, they cannot legally access your bank account, your smart phone, or the accounts for bills you have to pay. Unless this person has the financial resources to pay your bills out of his or her own pocket for a while, and somehow finds a way to access your bills to pay them for you (which is usually not possible), your rent or mortgage, utilities, and other bills will not be paid while you are incapacitated. If you have children, pets, or large animals such as a horse, their care cannot be covered from your accounts either. (If you have children, be sure to talk to your attorney about them when you set up a POA. Depending on your custody arrangements, you may need to also draw up separate papers with a Family Law Attorney to provide for your children’s care while you are incapacitated.) Hospitals and doctor’s offices cannot draft a Power of Attorney, nor can they advise you about how to select the person you list in the POA as your representative and make sure you’ve provided them with all the information — account numbers and passwords, for instance — that they’ll need to protect your home if you are incapacitated by a medical emergency. In Sarah’s case, had her mother had her way, Sarah would have returned home a week after being admitted to the hospital only to discover that her animals had suffered without care in her absence, and that her mortgage was five days overdue. A POA covers your home front while you need help, and makes sure there’s still a home to go back to with the lights on and the animals happy when the wonderful day comes that you can finally “go home.”
Sarah’s story had a happy ending. She was able to go home, her mother stayed with her for two more days, and then several friends came to help her out for a while. She recovered fully. But the experience left her feeling vulnerable. She had always assumed that in an emergency, someone would call her place of employment and that her best friend there would come to the hospital and talk to doctors for her. She hadn’t realized that’s not how the system works. Because even her doctor didn’t explain Incapacity Documents to her, Sarah didn’t discover the simple things she could do to protect herself until we recently became friends. She asked me over coffee one day to tell her what I do, and when I did she started to cry. Then her whole story came out. “How is it no one explains this to people?” she asked. “You’re telling me far more than half the population under 40 is single these days, and that all of those people face the same thing I did. Yet no one talks about Incapacity Documents. I can get these documents now, but I wish people could learn from what happened to me so they know to get them too!”
So I wrote out her story to share, and I promised to ask you to share it as well. In turn, she asked me to tell you what I do to help people avoid being caught in the situation she was. It is this:
I can draft a whole package of Incapacity Documents for you for several hundred dollars. One of the things I provide is personal advice about how to select your Health Care Proxy and Power of Attorney representatives, and how to make sure each person understands the responsibilities you’re giving them and what you want them to do. I also contact you each year to ask if there are any changes you need to make to these documents so they stay up to date. For instance, if you have broken up with the Significant Other who’s listed as your Health Care Proxy, you should probably change that paperwork. In most cases, the changes can be made for just a nominal cost.
Protect yourself. Do it today. And spread the word to all the single people you know.
In the 1960s, anthropologists developed a “Man the Hunter” theory of human social evolution that just happened to mirror Western ideas about family structures and division of labor that were prevalent at the time. In this theory, survival of the group depended on large hunts by cooperating groups of men, with women taking the job of processing the meat, hide, and bones into food, clothing, and other necessities. Now new research, carried out largely by women scientists, strongly suggests a very different picture – one in which women gathered most of the food eaten by early hunter-gatherer people. And once women had children, the person who brought in the most food of all was . . . Grandmother.