The new year is a time of fresh starts and beginnings. But it’s also a good time to plan for the end.
Planning for a health crisis and the end of life doesn’t have to be dreary. There is a lot of joy in organizing your final days, knowing that by being prepared, your final act will be one of guidance and support for your family members and other loved ones. End-of-life planning isn’t just about wills and funerals — it’s also a reflection of your values, your goals for healthy aging, and the hopes and dreams you have for those you love.
From experience, I can tell you that death is complicated for those left behind. Advanced health directives are essential — and should be created when you are healthy, not from a hospital bed. Funeral arrangements are costly, and the details — from the type of service to your final resting place (coffin or urn? Burial plot or cremation?) — are dizzying. Your credit cards, bank accounts, utility bills, cellphone accounts and internet passwords can become a huge burden for those who survive you, if you haven’t planned ahead.
Here’s a simple checklist to help you get started.
Create a crisis notebook: For me, choosing a binder where I could gather all my planning documents is what finally got me started. You will need to create additional hard and digital copies once you’ve made some progress. This AARP worksheet will get you started on compiling all the documents — medical, legal, financial and end-of-life — you need. It will take some time, but the worksheet is a great way to keep track of what you have left to do.
Start by writing your advance directive: Go to the AARP website to find the right forms for your state. This step is the one that most benefits you directly and will help your family make medical decisions on your behalf. The website Five Wishes is also a popular resource, with easy-to-follow instructions for creating an advanced directive.
Write a will: Gallup reports that less than half of Americans have a will. Without a will, the laws of the state will decide how your assets are distributed. Services such as Nolo, LegalZoom or Quicken Willmaker can help for a fee.
Make a digital estate plan:This guide from AARP will help you manage utility accounts, credit cards and social media passwords.
Plan your goodbye party: Having attended several funerals, I don’t want my survivors to incur the expense or burden of planning one. And I actually enjoyed researching the options and making goodbye plans for myself with a focus on a greener ending to my life than a traditional funeral and burial. I’ve picked a lovely black birch tree in the Berkshires through Better Place Forests to mark my final resting place.
Add a last letter: VJ Periyakoil, a physician who specializes in geriatrics and palliative care at the Stanford University Medical Center, started the Stanford Letter Project, to give people the tools they need to write to their doctor, friends or family. You’ll find the template and sample letters at med.stanford.edu/letter.
LGBTQ+ people can face unique challenges at the end of their lives. The article discusses some of the struggles they face and why they face them. Advance directives are the best way for LGBTQ+ individuals to make their end-of-life wishes known and to counteract discrimination.
Individuals who identify as LGBTQ+ statistically encounter discrimination and this does not stop when they face death and dying.
Biased blood relatives and medical personnel can be sources of end-of-life challenges for LGBTQ+ community members.
Having an advance directive may assist in ensuring a more dignified and respected dying process.
The end of life is a profoundly intimate time for the dying person and their loved ones. The dying process can strongly illicit emotions related to fear of the unknown and anticipatory grief. For lesbian, gay, bisexual, transgender, queer, and non-binary (LGBTQ+) individuals, the challenges can multiply.
What are some possible concerns?
When a dying person is not cisgender (identifying with the gender they were assigned at birth) or heterosexual, the end of life may become complex.
For example, family members who previously rejected their now-terminal LGBTQ+ relative may wish to visit to say their goodbyes. They may still hold biases against the sexual orientation or gender identity (SOGI) of the dying relative. Relationships that are already strained can add undue burden on the dying one and their close caregivers.
Culturally insensitive attitudes held by medical professionals can translate into micro-aggressions, withheld care, or abuse. Even people in legal same-sex marriages that have codified protections at the bedside are sometimes met with contempt.
The result could be that the non-conforming person may be denied the care, dignity, and support at the end of life every human wants.
Further difficulties for transgender individuals
Systemic and social prejudices that harm the transgender community persist and can follow them to the end of life. Again, the withdrawn relative who has not yet embraced the SOGI of their dying family member may arrive at the bedside, still deadnaming (using their birth name and not their chosen one), perpetuating an environment of perceived discord.
Medical workers are sometimes responsible for inequitable care provision when faced with patients and their bedside support system who are not cisgender or don’t fit a heteronormative presentation. Studies that contain evidence of this type of discrimination are now surfacing.
A supportive solution – advance directives
Advance directive creation acts as a vital process for formally stating exactly what a person envisions for their end of life. The term ‘advance directive’ is an umbrella term used for a group of formal documents that include a living will, a document naming one or more health care proxies, and organ/tissue donation documents (if so desired). It is not to be confused with a legal, financial will established with an attorney.
The living will
A living will spell out the detailed choices regarding what medical treatments a person would and would not want at the end of life. It communicates pre-planned decisions to all medical practitioners based on personal values. Also, a living will is what the chosen healthcare proxy will use as a guide in advocating for the dying LGBTQ+ person when they can no longer speak for themselves.
Each state has its own version. However, they all ask the same basic questions regarding medical procedures and interventions typical at the end of life. It guides medical providers in knowing whether or not to administer artificial hydration and nutrition as well as life-sustaining interventions such as a breathing machine or CPR.
Also, there is always space provided on the documents for writing personal statements and unique information to establish autonomy further. These addendums can be the key to receiving more personalized and respectful medical care. Appropriate pronouns, who one wants at the bedside, chosen name use, and more can be highlighted here.
What is a health care proxy?
A proxy is a person carefully chosen ahead of time to be the voice at the bedside when an actively dying person cannot express their wishes. This term is also known as a health care agent, patient advocate, medical power of attorney, or medical proxy (state-dependent). The proxy cannot override medical decisions if a person is conscious and competent at the time decisions are required.
It is recommended that more than one healthcare proxy be named in the advance directive. If one proxy is unavailable at a crucial time, having another designee who can step in can provide assurance.
Advance directives can be downloaded from the internet for free in every state. It may need to be notarized in addition to the necessary witness signatures. An individual’s primary care provider and all proxies must have a copy of the completed and signed documents. Providers can answer any questions to help make these personal medical decisions.
Advance directives are not only for those with a known terminal diagnosis. There is also the scenario of a sudden, catastrophic event that might lead to a critical care unit to consider. This now involves the forethought of younger, healthier individuals as well.
What may happen if no advance directive is available?
When a person is instantly unconscious and possibly dying related to an accident, essential decisions will need to be made immediately. Without a stated proxy, the closest blood relative will be legally elected as “next of kin” to make those choices. If that mother or father, sister or brother, is historically at odds with their dying LGBTQ+ family member, the situation has the potential for further disaster.
With an advance directive in place, wishes are already determined, and the supportive ally in the proxy role can guide the care desired and advocate for respectful treatment at the bedside. Having an advance directive may also prevent the need for guardianship imposed through the state probate court.
Ultimately, if no advance decisions are in writing, the stress of not knowing rests on those that care.
Every person over the age of 18 is encouraged to have advance directives in place, whether legally married, cohabitating, or single. They can provide additional protection of dignity the LGBTQ+ community asks for when it’s needed most. And, until more education is required for medical professionals in providing more culturally sensitive care, advance directives are another ally to add to the circle of support for the dying LGBTQ+ person.’
Confronting the fact that our loved ones will someday die — that we all will — is one of the hardest parts of being human. Most of us don’t like to think about death, and as long as it doesn’t feel urgent, it’s easy to avoid discussing it with family and friends.
Avoiding the reality, though, is risky. It increases the likelihood that we’ll be unprepared to make medical decisions when we need to make them. If we’re forced to make choices for an incapacitated loved one and don’t know what they want, we might agonize over whether or not we’ve made the right choice.
Over the last few years, I’ve been talking to my parents about death, in part because of my dad’s health complications, which include a pneumonia infection that nearly killed him last year. In my family, almost no subject is taboo, including death; often, my dad is the one who brings it up. I know that he has advanced directives and long-term care insurance, and that he doesn’t want overly invasive medical treatment, especially if it’s just delaying the inevitable. I know that he would prefer a quick death to a drawn-out decline. I also know — as does he — that we can only plan for so much, and that most of us don’t ultimately get to choose how we die.
Still, there’s a lot that can be planned for, and it goes beyond estate planning and establishing a will (more on that below). The advances in medicine over the last several decades mean that people have more decisions to make about their end-of-life care than they ever have before. That makes it even more important for individuals to start considering what’s most important to them now.
Consider what you hope to learn from a conversation, but don’t be too attached to an outcome
It’s helpful to think about what you might want to have come out of an initial conversation. There’s plenty to consider when trying to prepare for end-of-life plans, and lots of onlineresources with different checklists. Most involve establishing a will, which lays out where a person wants their assets to go after they’ve passed away; another option is to establish a trust, which is a legal entity to which a person can assign a trustee to manage assets after they’ve passed.
But for the first conversation, experts say, you shouldn’t focus on any of that. You want to keep it general and get a sense of where the person is at. What you’re really doing is gauging whether they’re open to talking about what they want from the end of their lives, what kind of planning they’ve already done, and how you can best support them in the process.
If they seem open to it, you might try to find out whether they’ve appointed what’s sometimes called a health care proxy, or a health care agent, or a durable power of attorney. Different states and institutions sometimes use different terms to describe this person, but essentially, it’s someone who can make medical decisions for a patient if they’re incapacitated or unable to speak for themselves. You may also ask whether they’ve established an advance directive: a document that lays out a patient’s specific wishes regarding the use of medical procedures and devices like ventilators and feeding tubes.
If you’re feeling nervous or worry they might not be ready to discuss these topics with you, understand that it’s fine — and probably even preferable — to initiate with open-ended questions and to prioritize being open to your loved one’s thoughts over trying to check things off a list.
That might mean letting go of expectations and keeping things in the realm of the general at first. “It’s easier to talk about how you want to live your life through the end, as opposed to how you want to die,” says Kate DeBartolo, who runs the Conversation Project. On the Conversation Project’s website, there are guides to help people begin those conversations. They focus on introspective prompts and questions, such as, “What does a good day look like to you?” and, “What matters to me through the end of my life is …”
The idea, DeBartolo says, is to get people thinking about their values, which can help clarify what kind of say they’d like to have in their medical care. “We talk to people who want every measure taken — every trial drug, every curative treatment until the end — and other people who absolutely don’t want that,” says DeBartolo. There’s no right or wrong answer to those questions. “The emphasis is on living well through the end, and what matters to you, not what’s the matter with you. Making sure that those conversations don’t get too medical or legal right away can be helpful,” she says.
Find an opening
There’s no perfect way to start this kind of conversation, but there are ways to make it easier, says Jamie Eaddy Chism, director of program development for the International End-of-Life Doula Association. Sometimes, it helps to take the pressure off of loved ones by talking about yourself. “Something like, ‘I’ve been really thinking today about how I want people to remember me, and what I want people to do and say when I’m not here anymore,’” Eaddy Chism says. “Using yourself as an example disarms the person a bit because they don’t immediately have to think about their own situation. Then you can ask a question like: How would you want people to remember you?”
Sometimes, pop culture provides an opening. Look for TV shows, books, or movies that everyone is reading or talking about that deal with death. They can be great conversation starters for families because they aren’t inherently personal but might invite further reflection — the season finale of This Is Us, which aired earlier this year, was a great conversation starter, Eaddy Chism says. There’s also Extremis, a short documentary on Netflix, that explores the tough choices that patients and family members have to make about whether or not to pursue more aggressive medical treatment near the end of their lives, and Being Mortal: Medicine and What Matters in the End, Atul Gawande’s 2014 bestseller about the challenges that advances in medicine have posed to patients, doctors, and caretakers.
Context can be crucial, too. Cultural backgrounds, religious beliefs, prior experiences with the health care system, and even a family’s unique culture and communication style might play a role in how you start a conversation. Some family members might not like the term “death,” but may prefer terms such as “transitions” or “passing away.” “Understanding how language fits into the conversation is important,” Eaddy Chism says, “so you choose your wording in a way that invites people into the conversation.”
Listen — and be aware of your preconceived notions
A good conversation “starts with really listening,” says Alan Carver, who specializes in neurology and palliative care at Memorial Sloan Kettering Cancer Center. “You really want to give the people that you care about the opportunity to share how they feel — and it can be hard to do if you’re doing all the talking.”
>Active listening means being open to any kind of response, even if it’s a dismissive one. You can’t force someone to prioritize a conversation if they share different values, and that’s important to listen for, too. “Different people respond very differently,” says Mildred Solomon, president of the Hasting Center, a bioethics research institute. “I know some people who are desperate for their children to hear their preferences, and they feel their children are refusing to talk about anything about the parent’s death,” she says. “On the other hand, I know people who don’t want to anticipate the possible downward trajectories and want to live in the moment. I respect that whole range.”
It’s important, when talking to elder loved ones, not to try to predetermine how we think they might react. Adult children, for example, tend to think they know their parents well, including their weaknesses, their biases, and their anxieties. But it’s key to remember that our parents have their own complex experiences and histories, and no matter how well we think we know them, we still mainly know them in the context of child and parent, meaning there is a lot we might not understand about them. Going in with preconceived notions about how they’ll respond makes it harder to hear what someone wants — and makes it more likely that conversations will become unproductive. “Listening requires you to catch your assumptions as they come so you can remain present with the person,” Eaddy Chism says. “It’s about giving people the freedom to be discovered, and giving yourself permission to discover new things.”
What if your loved one reacts poorly or refuses to engage? Apologize and try not to get defensive, says Eaddy Chism. She suggests you try something like: “I’m so sorry that this conversation made you feel like this. I know this was really uncomfortable, and I also know that I want to honor you. Can we try again later?” If they seem calm enough, you might try exploring why they reacted so strongly. Or you can redirect to something that might seem less scary, like: “I know you don’t want to talk about whether you want to be buried or cremated, but can we talk about hospital stays? What would you want in a hospital stay?” Still, she says, there’s only so much you can do with a family member who doesn’t want to engage. “Let’s be completely real in this, there are some conversations that we never return to, that people avoid and that we never have again. Don’t take that on as your own baggage,” she says.
The benefit to having these conversations with loved ones early is that it ensures that the person’s wishes are respected and that decision-making is easier for loved ones. But it doesn’t need to happen all at once, nor is it something that families have to handle by themselves. If someone is sick, Carver says, their doctor can and should work closely with patients and families to identify how much information they want about the course of an illness, what their priorities are, and to help with decision-making. Sometimes it means letting a family know they should move a wedding date earlier, or take a planned vacation in the next calendar year rather than indefinitely putting it off.
It’s also important to understand that while there may be several decisions to be made, there are resources available to help them do it; it’s not going to be easy or practical to try to do everything at once. “These are conversations to have over time,” Carver says. “It’s not like you sit down once and do it and then it’s over. It’s really over the course of a lifetime.”
A do-not-resuscitate order (DNR) is a legally binding order signed by a physician at a patient’s request. Its purpose is to let medical professionals know you do not want to be resuscitated if you suddenly go into cardiac arrest or stop breathing.
People who are chronically ill often regard a DNR as a graceful way to leave the world on their terms. The details of a DNR are usually discussed at the time of admission to a hospital, nursing facility, or hospice program.
This article explains what resuscitation means, its side effects, and its survival rates. It also describes the rules that often frame do not resuscitate orders, how to make a DNR order work for you, and some of the ethical issues worth considering.
What DNR Means
You may have seen TV shows set in hospitals in which a patient in cardiac arrest gets cardiopulmonary resuscitation (CPR), comes back to life, and is back to their old self in no time. In fact, being resuscitated is not so simple and can be dangerous in its own right.
Procedures used to resuscitate someone include:
Chest compressions: When a person’s heart stops beating, the heart cannot pump blood to the rest of the body, including the brain and lungs. Pushing down on the chest repeatedly can help keep blood flowing throughout the body until heart function is restored.
Intubation: When breathing becomes difficult or impossible due to an illness or injury, a patient may be intubated. This involves inserting an endotracheal tube through the mouth and into the airway. The tube is then connected to a ventilator, which pushes air into the lungs.
Cardioversion: Cardioversion is used to correct abnormal heart rhythms, including arrhythmias and atrial fibrillation (also known as AFib). This may be done using a set of paddles to deliver an electrical shock to the heart or via medication.
IV medications: Medications that are sometimes used in the case of cardiac arrest include epinephrine, amiodarone, vasopressin, and atropine sulfate. These are “crash cart medications,” so named because they can be found on the wheeled cart that medical professionals use during an emergency resuscitation.
For a patient in cardiac or respiratory arrest, a DNR states that none of these tactics will be used.1
Respiratory vs. Cardiac Arrest
The difference between respiratory and cardiac arrest is that respiratory arrest patients still have a beating heart that’s pushing blood around the body. Cardiac arrest patients do not. In both cases, though, a patient is unconscious and not breathing. Respiratory arrest will always lead to cardiac arrest if nothing is done to treat it.2
Resuscitation Side Effects
It’s important to realize that even if you are successfully resuscitated, you may end up with significant physical injuries as a result. For example, because the chest must be compressed hard and deep enough to pump the blood out of the heart, it can lead to broken ribs, punctured lungs, and possibly a damaged heart.3
Those who are resuscitated may also suffer brain damage. This can occur due to lack of blood flow to the brain followed by abnormal cell activity when blood flow to the brain is restored. Generally, the risk increases the longer the duration of CPR.4
Resuscitation Survival Rates
Survival statistics for resuscitation vary widely, partly due to the fact that there are many variables involved, including the age and health status of the patient and whether CPR was performed in a hospital, where emergency support is available.
A 2021 review looked at research published from 2008 onward that focused on the outcome of CPR in patients age 70 and older following in-hospital cardiac arrest (IHCA) and out-of-hospital cardiac arrest (OHCA). Survival rates were 28.5% and 11.1%, respectively.5
Meanwhile, a Danish study found that 30-day survival rates among nursing home residents who received CPR after OHCA was only 7.7%6
It’s a painful irony that most people who suffer cardiac arrest are not in a hospital, nursing facility, or hospice program. About 70% of them are at home, and the vast majority (about 90%) die. CPR can double or triple a person’s chance of survival.7
Types of Orders
A DNR order is sometimes referred to by other names, though the directive not to resuscitate someone is the same. Two other names for these orders are:
No code: In a hospital, an order to withhold resuscitation is sometimes called a “no code” to distinguish it from a “full code” or “code blue,” both of which mean every effort should be made to resuscitate a patient.
Allow natural death (AND) orders: While a DNR order simply states that no attempts should be made to restart breathing or restart the heart if it stops, an AND order ensures that only comfort measures are taken.8 This would include withholding or discontinuing resuscitation, artificial feedings, fluids, and other measures that would prolong a natural death. These orders are typically used in hospice settings or elsewhere for terminally ill patients.
A study on DNRs and ANDs finds “healthcare providers should address the concept of natural death, provide comprehensive information, and help patients and families to overcome the barriers.”8
DNR Order Rules
The application of DNR orders varies from state to state, especially regarding out-of-hospital (meaning ambulance) care. Some states have standardized forms for DNR orders; if the order is not written on that specific form, it cannot be honored. Other states are less regimented and honor any type of clear DNR order.
Many states allow emergency responders to follow DNR orders written to other care providers, even if they aren’t written on standardized forms. For instance, in New York State, paramedics and emergency medical technicians are usually allowed to follow DNR orders written for the staff of a nursing home.
They also may be able to honor orders written for patients getting nursing care at home if the home care nurse has a copy of the DNR order in hand.1 Each state is different, and municipalities may differ within each state.
Regardless of the format or the venue, DNR orders almost always follow some of the same general rules; they have to in order to be valid. DNR orders must:
Be written by a doctor rather than verbalized.9 There are exceptions to this rule, such as an emergency medical service physician ordering an ambulance crew to withhold resuscitation via the radio or a registered nurse taking an order from an admitting doctor over the phone.1 Generally, there are safeguards for these exceptions to make sure the order is validated later.
Be signed by a doctor. In those cases where orders were taken by a nurse over the phone, states usually set a deadline for the doctor to physically verify and sign the order.
Include the patient’s name as well as the date. Depending on the state, orders may expire after a certain amount of time or there may be a deadline for the physician to follow up. Even if a DNR order doesn’t expire, a particularly old order may prompt a caregiver to revisit the decision.
Diligence on DNR Orders
A doctor writes a DNR order only after conferring with the patient (if this is possible), the patient’s appointed representative, or members of the patient’s family.
Making a DNR Order Work for You
If you opt for a DNR order, here’s what you can do to ensure your wishes are respected:
Keep the physical order on hand and display it wherever paramedics might find you. Make a point to tell them about the order when they arrive. It’s a good idea to have more than one copy available and displayed, as well as a copy to bring with you to the hospital.
If you are traveling, ask your traveling partners to keep a copy of your DNR order on them at all times.
Consider wearing a piece of medical jewelry to alert others of your intentions. MedicAlert Foundation provides jewelry designed specifically for patients with DNR orders. The foundation keeps a copy of the order on file and can fax it to anywhere in the world.
DNR Expresses Limits
A DNR order addresses the issue of CPR, but it does not include instructions for other treatments, such as pain medication or nutrition.10
Ethical Complications of DNR Orders
The inconsistent application of DNR orders means some patients may get less than optimal care once providers are aware of the presence of a DNR order.11 It’s important to remember that a DNR order is not an order to withhold all treatment. It’s an order not to resuscitate.
Even the mere mention of “DNR” can spawn a wide range of reactions, many of them emotionally charged. Discuss the options with your doctor and your family when everyone is calm and rational—and hopefully sooner rather than later.
Why a Patient Would Choose to Have a DNR Order
People with a terminal disease, such as advanced cancer or dementia, may not want CPR. A poor prognosis lowers the likelihood of survival, with a higher risk of heart, lung, and brain damage if resuscitation is attempted. Views on CPR within the medical community are ever-evolving too, with some professionals revisiting guidelines on how and why resuscitation should be considered.12
A do-not-resuscitate order instructs healthcare providers to refrain from cardiopulmonary resuscitation (CPR) if a patient’s breathing stops or if the patient’s heart stops beating. It can also pose a dilemma, but one worth considering, especially in the context of your health (or the health of a loved one).
Here’s why: CPR requires the heart to be compressed hard and deep enough to pump the blood out of the heart. As such, it can lead to broken ribs, punctured lungs, and possibly a damaged heart. Those who are resuscitated may also suffer brain damage.
These actions may be too much for someone in frail health. If you wish to explore a DNR order, it’s important to know that the orders vary from state to state. Be sure to investigate the rules in your state before proceeding.
A Word From Verywell
Understandably, loved ones often have difficulty talking about a DNR order and may feel they are “giving up” on their loved one. You can take charge of your end-of-life plans while you’re still able to do so, and investigate the rules governing DNR orders in your state. Keep in mind that even if you get a DNR order, you have the right to change your mind, revoke the order, and request CPR.10
Frequently Asked Questions
How do you get a do-not-resuscitate order?
You can get one from a hospital, nursing home, or hospice program. Most states have standard forms that you can download online.
Who can sign a do-not-resuscitate order?
A doctor must sign a DNR order with the consent of the patient or the patient’s healthcare proxy or designated power of attorney.9
Can a DNR be ignored?
The Patient Self Determination Act (PDSA) requires that the wishes of an individual and any existing advance directives be honored in the United States. However, providers do occasionally disregard a DNR due, for example, to lack of communication.13 It’s also possible that an existing DNR is honored but providers fail to confirm with a patient or their representative.14
Planning for our own death or that of a loved one is difficult. According to a survey by The Conversation Project, 92% of us think it’s important to discuss our end-of-life wishes.Yet only one-third of us do so.
For those with intellectual and developmental disabilities (IDD), those conversations happen even less frequently.
“Death in general is still a taboo subject,” says Dr. Kyle Sue, at the University of Alberta, who treats people with developmental disabilities of all ages. “For people with a disability, health practitioners don’t know how to bring it up, or they don’t know how much the person will understand. There’s a level of discomfort in trying to include them.”
IDD includes conditions that appear before the age of 18 that affect physical development, learning, language or behavior. Some conditions begin in utero, such as Down syndrome which is caused by an extra chromosome. Others are from a birth injury, such as cerebral palsy. One common disability, Autism Spectrum Disorder (ASD), likely has multiple causes and may not appear until after age one.
“I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it… I would flat out accept it. Maybe I’ll give my body to science.”
Most notably, the average life expectancy for people with Down syndrome is now 61, compared to just 25 years old in 1983. Children with cerebral palsy are also living longer. A study in BMC Neurology found that 80% of children with mild CP will live to be 58 or beyond. Although this is good news, it presents new challenges as individuals outlive their parents or other caregivers.
Having conversations about end-of-life wishes is important while the individual can communicate.
Nothing About Them Without Them
Charlotte Woodward defies stereotypes regarding people with Down syndrome and other disabilities. As is common in Down syndrome, she was born with a heart defect and has had four open-heart surgeries including a heart transplant — one of the few people with Down syndrome to receive an organ transplant.
Woodward studied sociology at George Mason University, concentrating on discrimination against people with disabilities in the medical system, and she is now only the third person with Down syndrome to be a registered lobbyist. She works to advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act, introduced by Washington State Republican representative Jaime Herrera Beutler and California Democrat Katie Porter.
“Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”
“I’m still in my thirties. I want to live my life to the fullest,” says Woodward, who is Education Programs Associate with the National Down Syndrome Society. Still, “I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it. I won’t be angry or bargain. I would flat out accept it. Maybe I’ll give my body to science. And I would like to get my last will and testament in place and advance medical directive as well.”
Her mother, Darcy Woodward, 58, finds such conversations difficult. “There’s definitely a concern about the future among parents of children with disabilities. We’re trying to make sure things are in place to protect our children who will hopefully have long healthy lives. I try not to think about it, but I know it’s important.”
In the past, someone like Charlotte would not have a seat at the table when it came to planning her health care. But in the 1980s that began to change, explains Leigh Ann Kingsbury, a North Carolina gerontologist who wrote one of the first guides on end-of-life planning for people with IDD.
People with disabilities who receive Medicaid-funded services must have an annual plan for their care. “Up until the ’80s these planning processes were really perfunctory — professionals getting together and saying ‘here is what we think is best for Susie Jo’ in a highly patronizing, not culturally relevant manner,” says Kingsbury.
That began to change when advocates demanded that their voices be included. In the 1990s, the slogan “nothing about us without us” became a rallying cry in the disability community.
“People with IDD can and do create advanced directives for their care,” says Nygren. “The thing that’s different is they need some help discussing and thinking through the options, the way people without IDD can do it independently.”
But many medical professionals and caregivers are reluctant to include people with IDD in decision making. “I never met a person with IDD who didn’t understand the cycle of life,” says Nygren. “People aren’t automatically comfortable about it, but there’s awareness. People want autonomy and control over decisions that affect them. Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”
According to Nygren, the number of those with extreme intellectual limitations who cannot understand or speak is small, compared to the overall population of people with IDD. Even then, people who know them well know their likes and dislikes that can help inform care.
Dr. Brian Chicoine has been medical director of the Adult Down Syndrome Center in Illinois since 1992. The center was the first clinic to serve adults with the disability. He cautions that there is nuance about how and when you talk about death. “Our patients are so concrete. They can become so focused on the fact that they’re dying, they have trouble living,” he explains.
Many have a different understanding of time, he adds. For example, the parents of a patient bought cemetery plots for themselves and their son. “This was a very bright guy, but for the next five years we dealt with his depression,” as the young man focused on his death which was far in the future. “So we have to be careful with these conversations,” says Chicoine.
Barriers in the Medical System
Whether or not you have disabilities, having a good relationship with your primary care physician is important for having your choices honored at the end of life. But finding a doctor can be tough for those with IDD. Physicians often do not want to treat people with disabilities. An article in the October 2022 issue of Health Affairs entitled, “I Am Not the Doctor For You” about three focus groups of physicians across disciplines and regions of the U.S. found considerable reluctance and outright prejudice towards people with disabilities.
“Some participants … revealed negative attitudes … and commonly used outdated or ableist language (for example, ‘mentally retarded’),” according to the study. Some admitted that they had turned away people with disabilities from their practice. One reason is time constraints. Explaining medical issues to someone with an intellectual disability takes more time, yet doctors are reimbursed for a 10-minute appointment even if it takes 30.
“Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”
In one case, ICU physicians repeatedly pushed for a “do not resuscitate” order to be in place for a woman with Down syndrome. Her primary care doctor and family refused. The woman went on to a full recovery.
Medical schools and residency programs offer little training to help providers feel more comfortable treating this population.
Sue begins end-of-life conversations when a patient he’s followed for years develops more serious symptoms.
“When I bring it up, I’m not saying, ‘Okay let’s talk about dying.’ I begin by asking what are they seeing? How is your child compared to ten years ago? How are things at home? For everyone who has serious health conditions, we do need to talk about planning for the future. As conditions change, it’s best to be prepared well ahead of time, rather than making difficult decisions in a crisis. I’ve found that families are quite receptive,” Sue says.
If a person ends up in the ICU, communication can be very challenging. Palliative care specialists must assess their level of pain, for example, if they cannot converse. Treatment choices can be hard to determine, especially if there is no guardian or caregiver who knows the patient well. Guardians are typically family members, even if they have not been living with the patient. The staff of group homes who may know the patient best are usually not included in hospital decisions.
“No matter who the patient is, we always want to get as much information from a person based on what they do and don’t want, what they do or don’t value,” says 2021 Next Avenue Influencer in Aging, Dr. Jessica Zitter, a specialist in both critical care and palliative medicine at a public hospital in Oakland, California, and author of “Extreme Measures — Finding a Better Path to the End of Life.”
“The first principle is to try to elicit from a person the things that are important to them. Bring that information into their health care plan and medical decisions. Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”
Ultimately with a life-threatening illness, no matter the patient’s disability, “What we really need to be saying is, we’re not going to abandon you. We want to do what you want until the last moment. We’ll hold your hand,” says Zitter.
Supported Decision Making
Supported decision making is a process that helps people with IDD make decisions about important life issues. A team of family members, friends, neighbors, professionals or volunteers manages discussions to help the individual decide things about jobs, marriage or housing.
The process can also be used for end-of-life planning.
Darcy Woodward is exploring how to disband her guardianship and transition to supported decision making. She recognizes that Charlotte can make her own decisions. “I wouldn’t want guardianship to transfer to a stranger who would disregard Charlotte,” she says.
For parents of adults with IDD, such planning is critical, which is why The National Down Syndrome Society plans to publish an end-of-life guide. “It’s really about proactively planning for end-of-life care,” says Rachel Grimm, manager of health programs, aging and caregiving for NDSS.
“We want readers to recognize that having a backup plan and planning for the future are so important for happiness and sustainability. We’re encouraging families to find a lawyer to walk them through,” Grimm says.
You’re too busy and alive to think about death when you’re young. “It always seems too early, until it’s too late,” declared the National Healthcare Decisions Day a few years ago. You want medical insurance for a sudden illness or injury. You ask our employer and government to offer retirement benefits to retire well. What about your hope to die well? Although you can’t control your future, you can plan for it.
By Sharleen Lucas, RN
End-of-life planning – also known as advance care planning – gives you a powerful voice if illness or injury leaves you unable to speak for yourself.
Hard to imagine, right? A day when an illness or injury steals your ability to make decisions for yourself. When you’re young and buzzing through your days of hard work and fun, death is an abstract, nebulous, and distant concern. Until a pandemic hits. Or you walk away from a nearly fatal motorcycle accident. Or your first child is born. Suddenly, death creeps closer and these moments make you think a little harder about life and death.
In 2020 according to the Centers for Disease Control and Prevention, unintentional injury was the leading cause of death for 15 – 44-year-old Americans. No one knows what tomorrow brings, as the old saying goes.
But wait, isn’t thinking about death harmful to young people?
There’s no getting around it. When you plan for end-of-life care, you have to think about death.
I asked palliative care psychologist Dr. Dwain Fehon if it’s mentally healthy for young people to complete advance directives. As Associate Professor, Chief Psychologist, and Director of the Behavior Medicine Service for the Yale School of Medicine and Yale New Haven Hospital, Dr. Fehon has worked with countless patients of all ages facing mental and terminal illnesses.
His answers were enlightening. “When we can talk openly about difficult topics early in life, it’s just so healthy and helpful,” he expressed in his soft, kind voice. “It allows you to formulate ideas and to take in the thoughts and opinions of others so that you’re not alone or isolated with your thoughts or fears.”
There’s certainly evidence to support his words. When it’s explained correctly, most younger people want to talk about end-of-life issues.
In 2022, the American Journal of Hospice and Palliative Care published a study of young people’s perspectives on end-of-life planning. The researchers talked with 30 white and Black participants. They found that 87% of them were comfortable talking about the subject and wanted to make their own end-of-life decisions. Even though the sample size was small, this research is consistent with other studies.
A study published in 2019 found that young adults welcomed the chance to discuss advanced care planning. They even wanted more information about it. Researchers found a significant improvement in their “self-perception of comfort, confidence, certainty, and knowledge” about death planning. They recommended more end-of-life talks with young people.
When you’re in your 20s and 30s, paving your path and making your own choices are top values. Planning for death empowers you to voice your opinion about the medical care you want if you can’t speak for yourself.
In 2015 researchers published findings from their end-of-life discussions with 56 young people between the ages of 18-30. They found each subject felt death planning was a valuable way to express their individuality. They also liked that advanced care plans can change and grow as they did.
Surprisingly, most young and healthy people are willing and even eager to talk about death planning.
“It’s interesting, thinking about death gets you thinking about life. There’s value in thinking about these things, and when we can think about it, it helps to reinforce a general acceptance within ourselves that death is a part of life. And it’s okay to talk about. It’s not a taboo topic that needs to be kept quiet.” — Dr. Fehon
His words reminded me of the young, healthy mortician Caitlyn Doughty, who founded the Death Positive Movement in 2011. Her goal is to help people of all ages break their silence about death. Topics kept in the dark create more confusion, robbing people of their power to understand the issue and make their own choices about it.
Death planning is actually about life
Dr. Fehon’s wisdom here continues. “In the palliative care world, we have a concept called double awareness,” he told me. “One component is life engagement, and the other component is death contemplation. The idea is to hold these two concepts in our lives. We can contemplate death and still be engaged in life.”
The lightbulb lit up in my head. Death contemplation can engage us deeper into life. This is why many young people like it. The young participants in these studies had the chance to clarify what they want from life now and in the future.
But if we think about end-of-life plans and find ourselves disengaging from life, something’s wrong. We may be overly preoccupied with dark fears or sadness about death. In these bleak moments, we’re likely isolating ourselves from loved ones or others who can help us with the process.
End-of-life planning is a process that involves your loved ones. They need to know what decisions you’d like them to make if you can no longer speak for yourself. So, no one should go through the process alone.
Alright, I’m convinced. But how do I start end-of-life planning?
We can sum up the process into three steps.
Complete your advance directives and make them legal.
Post them openly in your home and give them to loved ones and your doctors.
Talk about them with your health proxy, your loved ones, and your medical team.
What are advance directives?
Advance directives are the documents that make your choices legal. These documents include a living will and a power of attorney for health care.
A living will describe the type of end-of-life medical care you want in certain situations. It directs and guides your chosen decision-maker and medical team to make decisions for you. Your instructions in the living will, can be as creative as you want.
These directives are kind to your family. Instead of agonizing over medical decisions without your input, they can more confidently and peacefully make the right decisions for you.
A power of attorney for health care legally names the person you want to make your healthcare decisions when you cannot. This decision-maker is also called a health proxy. They become your voice when you can’t speak for yourself.
Your advance directives are yours to define and only become active when you are suddenly, by illness or injury, unable to make your own decisions.
Where do I get the paperwork?
For a paper copy, start with your doctor’s office or the closest hospital. They often stock advance care paperwork that meets your state’s standards.
Not surprising, there are many online options to suit your needs. These sites are a great place to start because they help you think about your end-of-life wishes and answer a lot of questions. Some are free, and some cost as little as five dollars. You can get trustworthy free documents at CaringInfo,MyDirectives, and Prepare for Your Care.
But these details only scratch the surface. Planning can feel overwhelming, but don’t let that stop you. Push through for the sake of your life now. For the sake of your loved ones.
If it gets hard to talk about or feels too complicated, consider talking with a local palliative care social worker or chaplain. End-of-life doulas also help people safely talk about death and advance care plans.
Remember, death planning is about life. Let these words from Dr. Fehon guide you. “What does living well mean now [to you]? Whatever your circumstances, whether you’re healthy or not, [end-of-life planning] is a recognition of what’s important and to try to live in a way that is in alignment with your values, your priorities authentically.”
Choosing a healthcare proxy could be one of your most important decisions. As your medical decision-maker, they’ll be your voice if you become too sick or injured to speak for yourself. They tell the doctor whether to continue lifesaving treatment or whether to stop treatment. They know which family members you want visiting you and which you don’t. They know what you want because they’re someone you trust.
A health proxy holds the power of attorney to make health care decisions for you when you can’t because of illness or injury.
Choosing a health proxy is part of end-of-life paperwork called your advance directive.
The paperwork is simple but choosing the right person can be tricky.
You’ll want to pick someone you trust who’s up to the task.
People who complete health proxy and living will paperwork are three times more likely to have their end-of-life wishes followed.
Learn how to choose a proxy, discuss it with them, and make it legal.
Surprisingly, however, the best proxy may not be your partner or your adult child. Choosing the right person can be more complicated.
A health proxy is your voice
If you’re whisked to the hospital after a car accident, unconscious and traumatically injured, who will speak for you if you can’t talk? A health proxy is your health care agent who voices the type of medical treatment you want if you’re incapacitated, the legal term for being unable to manage your affairs because of sickness or injury.
Another name for a health proxy is a surrogate decision-maker. Your proxy has the power of attorney to make health care decisions for you. Those decisions may affect the hospital bill, but a health proxy can only make medical decisions, not financial ones.
How does it work?
Choosing a health proxy is part of an advanced care planning process. Advance directives are the legal advance care documents describing your wishes for end-of-life care. Part of the purpose of the paperwork is to name a health proxy.
Choosing one is a simple process but can be emotionally trying:
Choose someone you trust to make such decisions for you.
Talk with them about the role and your end-of-life wishes.
Sign the official paperwork together.
Give your medical team and loved ones a copy of the document.
How to pick the right person
Rules can vary between states, but generally, your proxy must be over 18, can’t be a part of your current medical team, and shouldn’t be someone who will receive an inheritance or other benefits after you die.
Otherwise, you can pick nearly anyone to be your health decision-maker. Your proxy can be a family member, a partner, a friend, a spiritual leader, a neighbor, a coworker…you get the idea. They don’t have to live close to you, but that can be helpful for some people.
First, think about the people you trust and those who know you best. Second, consider whether they’re up to the task.
Surprising to some, a partner, adult child, or parent may not be the best proxy for you. The task is too painful or daunting for some loved ones.
Your decision-maker will have to make tough decisions in the heat of a traumatic moment involving paramedics or hospital staff. They’ll have access to your medical records and will be the communicator between your doctor and loved ones. Deciphering medical language and asking questions requires someone bold to advocate for you. Who do you want to decide “when to pull the plug?”
It’s also wise to pick a second proxy in case your primary health agent is unavailable.
If you can’t think of the right person right away, you must complete the second part of your advance directives – your living will – and talk with your doctor. This document outlines what kind of medical care you want in certain circumstances that bring you near death. It’s different from the more common will that directs financial and asset decisions after you die.
If you don’t have a personal advocate, the living will champions your wishes.
If you have no one you trust and no close relative, a court may appoint a surrogate decision-maker for you.
With this powerful living will in hand, you are three times more likely to have your wishes followed, says emergency doctor Elizabeth Clayborne in her moving TEDx video.
Isn’t my spouse automatically my proxy?
In most states, yes, including domestic partners. If you don’t have a partner, most states will default to your next closest relative, adult children first and parents second.
Even if you are married or close to your children or parents, are they the best decision-maker for you? The decisions can be too heavy for some people to bear. Instead of choosing a close loved one as your healthy proxy, you could require the proxy to consult with that loved one before making a decision.
How to talk with your proxy
Talking with your medical decision-maker empowers them to make the best decisions for you.
First, discuss the role. Be sure they understand what it means to be your proxy. Allow them to say no if they need to. Take time to answer their questions.
If they agree, start talking about the details like:
Your medical history
Medical treatments you don’t want
Life-saving treatments you want and when
The life-saving treatment you don’t want and when
Where do you want to die
Who do you want to visit you
Who you don’t want to visit you
Who you do and don’t want to be updated about your medical situation
Spiritual or religious wishes
Write down as many of these details as you can for your decision-maker. A living will is the best way to document your wishes. It could be helpful to give your proxy The Conversation Project’s booklet about how to be a health proxy.
Make it legal and spread the word
You don’t need a lawyer to complete health proxy documents. Most states do require two witnesses to watch you sign the form. They may also require a notary to notarize the signed form. Each state has different advance directive forms. You can find the right form on trustworthy sites for free.
Once the form is complete, give copies to your health proxy, your loved ones, and your doctors.
Don’t lock the form away in your safe or safety deposit box. Be sure it’s easy to find for anyone in your home.
You’ll want to give copies to loved ones who are not your health proxy, too, so they clearly understand the plan. As for those you don’t want to be involved in your care, tell them, too. They need to know who will be speaking for you.
These can be taxing discussions. Be sure to talk to a counselor, a friend, or a spiritual advisor if needed.
Your health proxy isn’t set in stone.
You can change your healthy proxy at any time. You can also update your living will at any time. Keep the thinking and talking going and update your documents and your health proxy accordingly. Big life changes like having a child, getting married, or facing a serious diagnosis can all affect your end-of-life choices.
Now that you know what a health proxy is and are thinking about your-end-of life wishes, why not take the final steps and complete the paperwork? Just be sure to finish. Don’t let the power of medical decisions slip out of your hands.