11 End of Life Documents for Mesothelioma & Cancer Patients
Although patients can outlive a prognosis and even reach remission, mesothelioma remains one of the worlds most deadly conditions. This is why mesothelioma patients should take as many measures as possible to ensure their personal finances and responsibilities are covered. Many people have a will prepared, but there are several other end of life documents that are essential family members or patients dealing with mesothelioma. Without these kind of documents, loved ones will have to make difficult decisions on your behalf with no guidance. Although it may be difficult to discuss, Mesothelioma Hub feels it is still necessary to prepare for the worse. Here is our list of eleven essential documents that all families should prepare while dealing with a mesothelioma prognosis.
1) Letter of Competency
A letter of competency is one of the first end of life documents to complete during your planning. A letter of competency is a statement from a mesothelioma doctor or specialist stating that a person is capable of making informed, stable decisions. This end of life document could apply to health care, finances, or estate. A common side effect of mesothelioma treatment is memory loss, confusion, and brain fog. Therefore, it is essential to obtain a letter of competency if applicable.
2) Living Trust End of Life Document
A living trust is another essential piece of end-of-life paperwork. A trust is created and funded during a patient’s lifetime that they can amend or revoke as time goes on. A living trust appoints a person or corporation to act as a “trustee” after their passing. The document also designates the “beneficiaries,” aka the people who receive income or other property from the trust. This trustee manages the trust property for the benefit of the beneficiaries.
The average lifespan for a mesothelioma patient after receiving a diagnosis is 4 – 18 months. A living trust is an end of life document that you should assemble as quickly and efficiently as possible during your end-of-life preparation and especially during the more advanced terminal stages.
3) Last Will and Testament
A last will and testament is the legal end of life document specifying a patient’s last wishes pertaining to assets and dependents after death. Although similar to a living trust, the last will controls property directly under the control of the individual and does not include jointly owned assets whereas a living trust controls all assets. Details included in the last will and testament include what to do with possessions, and what will happen with their responsibilities including dependents and management of financials.
4) Letter of Intent
Although not a legal document, a letter of intent can be beneficial for your executor and family members. A letter of intent can act as an end-of-life checklist for your loved ones for wishes not covered in a will. The document can include the location of important legal end of life documents, names and contacts, care for pets, and many more details. It should remain a high priority for those with wishes that can’t be fully explained within other documents.
5) Financial Power of Attorney
The purpose of a financial power of attorney is to designate an agent to handle financial affairs. This person has the legal ability to make decisions about a person’s finances when someone is ill, disabled, or physically not present. The agent should make arrangements in line with the person’s wishes but has full authority to make autonomous decisions until their authority is challenged or revoked by the law.
Many people on their life journey were negligently exposed to asbestos and developed mesothelioma. This is where your a financial power of attorney can come in and assist with the legal side of things and even pursue legal help and compensation.
Need to Obtain End of Life Documents?
A late stage mesothelioma diagnosis can bring up difficult questions. Request an evaluation and let us help you with your case. Evaluate My Case
6) Health Care Power of Attorney
If a patient is unable to make medical decisions for themselves, they may choose to have a health care power of attorney. A health care agent should be someone trustworthy and noble as they can:
Access medical and mental health records and share them with others
Carry out plans or make decisions about the body or remains
Throughout the mesothelioma journey, several health-related decisions will need to be made. Whether you are going through treatment or are staying in an assisted living home, a health care power of attorney can assist you in these decisions and maintain important end of life documents.
7) Living Will End of Life Document
A living will is a vital facet of a patient’s end-of-life plans. This document declares a patient’s desire to have death-delaying procedures withheld after being diagnosed with a terminal illness. This end of life document can assist doctors and loved ones if a decision needs to be made about withholding death-delaying procedures.
The medical community considers mesothelioma a terminal illness. If you are interested in death-delaying procedures being withheld, you should complete a living will.
8) Organ Donor Care
Those interested in donating their organs should complete a health care directive stating their wishes. If arrangements have already been made, specifying an end of life document should include all necessary information. If a patient has a health care agent, they can also make the decision with guidance from the patient.
9) HIPAA Release
Health care information of everyone is not accessible by others before or after their death. However, a HIPAA release form shares otherwise protected health information with other individuals or organizations. Patients should file a HIPAA release form if they would like their health care agents or loved ones to have access to their important end of life medical details.
10) DNR Order End of Life Document
A health care provider will typically begin CPR and life-saving activities if the heart or breathing stops, however, people can choose to not receive care under these circumstances. A do not resuscitate (DNR) order states that a patient prefers to not receive CPR in the case that the heart or breathing stops.
Many mesothelioma patients that pass, developed the condition due to negligence. The patient’s loved ones may be eligible to file a wrongful death suit against the individual or company believed to be responsible for negligence. Thats why it’s so important for to keep all your family members end of life documents secured and organized.
11) Digital Asset Instructions
Nowadays, the average person has almost 200 digital accounts including bank, investment, insurance, cryptocurrency, and social accounts. Some of these accounts, if not all, will need attention after a person passes. If these accounts are password protected, a patient should assemble a list of login information. Patients can even assign a digital executor to manage online accounts after they pass.
Only one in three U.S. adults has an official plan in place for end-of-life care, according to research in Life Affairs. Formalizing these details when you’re able to do so can make a world of difference for you and your loved ones down the line.
Read on to learn about advance directives, including what they are, why they’re important, what challenges may arise and how to ensure your or your loved one’s wishes are in writing so they’re more likely to be honored if and when the time comes.
Advance directives are written instructions regarding what a person wants in terms of health treatment and care should they lose the capacity to voice these desires. Samantha Winemaker, M.D., a palliative care physician and co-host of the Waiting Room Revolution podcast, defines advance directives as “an expression of someone’s values and wishes based on what’s most important to them in their life.”
Advance directives were first introduced in the U.S. in 1967 as a component of advance care planning. Reaching a step beyond informed consent, they help people prepare for inevitable and unpredictable life events that can impact a person’s ability to direct their own care. These documents provide space in which patients can wield more power and autonomy in shaping their health care experiences, particularly as it relates to end-of-life care, says Dr. Winemaker.
Types of Advance Directives
There are several types of advance directives, including (but not limited to) living wills, health care powers of attorney, do-not-resuscitate (DNR) orders and physician orders for life-saving treatment, says Ferdinando Mirarchi, D.O., chief medical officer of the Institute on HealthCare Directives.
Physician orders for life-saving treatment (POLSTs) outline a plan of end-of-life care that reflects the patient’s care preferences as well as their health care provider’s judgment based on a medical evaluation. This advance directive is only valid once agreed upon and signed by both parties.
A living will is a written document that outlines a person’s health care wishes for end-of-life care in the event that something prevents them from voicing their own values, wants, wishes and needs for whatever reason and they cannot make such decisions on their own. Living wills typically tell health care providers what treatments the person does or doesn’t want when the individual no longer has the competency to make such decisions, and some include religious preferences as well.
“They are [written] documents that provide a way to express your wishes if you can’t speak for yourself,” adds Dr. Mirarchi.
A health care power of attorney, also called a health care proxy or health care agent, is someone a person appoints or designates to advocate for them in the event that they can no longer advocate for themselves.
The importance of choosing a power of attorney cannot be overstated. Dr. Winemaker describes the role as a culmination of all the previous conversations they’ve had with the person about what they value and the tradeoffs they’re willing to make. They need to pick what the person they’re advocating for would want and put their wishes in the context of the given situation. A power of attorney is only as good as how well they know their role, says Dr. Winemaker.
Do-not-resuscitate (DNR) orders are medical orders written by a doctor explicitly instructing health care providers not to use cardiopulmonary resuscitation (CPR) should the patient’s breathing stop or heart stop beating. “Depending on the state, these orders can also be written as a cardiopulmonary arrest,” Dr. Mirarchi.
Various guidelines for each of these advance directive documents are outlined in state laws and often templated by specialized attorneys. You may also create similar documents on your own. The more specific a person is with the information they include in an advance directive, the more closely their wishes will be followed when the time comes.
Why Are Advance Directives Important?
Advance directives are essential for patient autonomy. They empower a person to have their wishes honored in the event that they’re no longer able to speak for themselves.
What’s more, the use of advance directives is linked to higher utilization rates of palliative care (health care for people living with a serious illness), reduced stress toward end of life, improved communication between health care teams and patients’ families, and reduced health care costs, according to research in the Journal of Gerontological Nursing.
It’s important to understand the broader context of how advance directives play a role in how people experience health care. “We have to [acknowledge] that 90% of us will end up with some condition that will result in multiple [health care] decisions,” says Dr. Winemaker. “We have to [be ready to] make [these] decisions for ourselves and [others]. It’s not ‘if’— it’s ‘when.’”
Coordinate with your or your loved one’s health care team to keep time on your side, advises Dr. Winemaker. “Don’t put yourself at a disadvantage or work in crisis mode. This is a part of life, and just like with everything else, planning is the best medicine,” she says.
Dr. Winemaker also explains that it’s important for patients to play a more active, consumerist role in their health appointments by expressing person-centered requests.
“The health care system is all about bi-directional sharing—it helps diagnose an illness and treat the illness,” she says. Often, the goal is to keep people going for as long as possible and keep the illness quiet as long as possible. However, quality of life is often superseded by the pursuit of longevity. So, it’s crucial to be open, honest and proactive with your care team so they can make recommendations and treatment plans that best suit your specific situation and personal preferences.
In fact, the point of an advance directive and participating in advance care planning is to go against the health care conveyor belt—you won’t get what you need unless you’re vocal about your wishes, says Dr. Winemaker. Your treatment plan should reflect who you are.
When Should You Make Advance Directives?
There’s no “best” time to file advance directives, but Dr. Winemaker says the sooner they’re in place, the better. And remember care planning is not a one-off conversation, but rather a series of discussions with your loved ones and yourself about what suits you best.
“When you’re healthy, reflect on what movies you watch on Netflix,” suggests Dr. Winemaker. “Think of ‘The Notebook’ or ‘Still Alice.’ What would you do in either of those situations? Think of yourself in multiple scenarios and what you’d want, and share those [details] with people around you as soon as possible.
Meanwhile, there are certain points in life when it can be advantageous to update advance directives, says Dr. Winemaker, which include (but aren’t limited to):
When you become a partner or spouse
When you become a parent
When you lose someone important to you
When your contact information (telephone number, physical address, email address, etc.) changes
When your selected health care power of attorney is deceased or you want to select another person in their place
Generally, advance care plans or advance directives should be updated and reviewed annually similar to how you schedule an annual health care appointment with your primary care physician.
When Are Advance Directives Implemented?
Each type of advance directive serves a unique purpose and is implemented in certain situations.
POLSTs are implemented once both the patient and their health care provider agree and sign off on a medical treatment plan as it relates to the person’s current health status.
Living wills go into effect when the person enters any of the conditions listed in their living will document. At this point, the document becomes operative and is followed by all care team members, explains Dr. Mirarchi.
Meanwhile, a health care power of attorney can be utilized at any point in a person’s life when they aren’t able to make a health decision for themselves, be it due to an acute health emergency or progression of a chronic illness.
And DNR orders become active when a person stops breathing or their heart stops beating, at which time the care team isn’t allowed to perform CPR to resuscitate them.
What Happens if You Don’t Have Advance Directives?
Without advance directives, the specific outcomes of your care are more uncertain. “From a health care perspective, there are times when the health care team can act in an emergency in the patient’s best interest, but that’s reactive care—not proactive care,” says Dr. Winemaker. You or your loved one likely wants to be in a position of control over their care, which requires having a plan.
“If it’s not an emergency situation, [the health care team has] to try to find people who are in the person’s life. Ultimately, if a decision needs to be made, they can also go to a higher-level attorney or representative,” explains Dr. Winemaker. There are various contacts the health care system can use to make a legal decision on a patient’s behalf.
Unaware of what a patient wants, the health care team and family members they’re able to contact are often left to make decisions based on what they think they know about the patient. Naturally, a lack of advance directives in such circumstances can cause undue stress and burden for loved ones who, even with good intentions, might make the wrong decisions for the person in need of care.
Common Challenges With Advance Directives
According to Dr. Mirarchi, one common challenge with advance directives is something he refers to as “medical stranger danger.” Advance directives are documents often written with the help of attorneys and then interpreted by health care professionals, explains Dr. Mirarchi, so it’s not surprising that misunderstandings that can turn into medical errors occur. More specifically, his research shows advance directives can “get prematurely misinterpreted as a DNR order, and DNR orders can get misinterpreted as do-not-treat orders.” However, he adds that while most people in medicine are “medical strangers” to you, your doctors are often people who actually know you well enough to make informed decisions as it pertains to your care.
The goal is for the health care team to make decisions that honor what a person says they want, says Dr. Winemaker. There’s a process to override someone if they’re not making a fit or good decision, but you typically don’t have to escalate a situation to that level. And often, a person’s decision is coming from a good place.
There’s no time like the present to get started on your advance directives if you haven’t already— and encourage your loved ones to do the same. Once you have them in place, remember to review them at regular intervals as well to make sure they still represent your wishes and desires.
An advance directive is a voluntary, legal document that articulates an individual’s wishes regarding future medical care and treatment.
By Gloria Brigham, EdM, MN, RN
As highlighted during the COVID-19 pandemic, individuals have preferences about their life and future. These preferences arise from values, cultural norms, knowledge and available information. They are influenced by past experiences and the consequences of previous decisions. Periodically, preferences change.
Health care planning for the future is important to ensure that your wishes are known and followed when you are unable to speak for yourself. Sharing what matters to you most (in writing) is one way to clearly communicate with loved ones and health care providers.
What is an advance directive?
An advance directive is a voluntary, legal document that articulates an individual’s wishes regarding future medical care and treatment. It is valid from the time of completion until the end of life. In Washington state, there are two types of advance directive that can be completed by adults 18 and older:
Durable power of attorney for health care – The durable power of attorney for health care is also called a medical power of attorney or health care agent. This is an individual that you choose to make health care decisions (on your behalf) if you are unable to make them for yourself. The health care agent cannot be under 18 years old, your health care provider or an administrator/employee of a health care facility where you receive care or live.
Health care directive – A health care directive is also referred to as a living will. This written document includes the type of medical care and treatment that you wish to have near end-of-life, if any. This document informs health care professionals of your preferences in the event of an accident or life-threatening illness when you are unable to speak for yourself.
Who should complete an advance directive?
It is advised that everyone over the age of 18 have an advance directive. The reality is that no one knows when an event might occur that renders us incapable of making our own decisions.
How is an advance directive completed?
Fill out advance directive forms found on the Honoring Choices Pacific Northwest website1. An attorney is not needed for an advance directive. Once your advance directive forms are complete, they are legally valid when notarized or signed by two “disinterested” witnesses. Witnesses must be 18 years of age and cannot be related to you by blood or marriage and cannot be your attending provider or an employee of your provider or the health care facility where you are a patient or receive care.
How is POLST different from an advance directive?
According to the Washington State Medical Association, Portable Orders for Life-Sustaining Treatment (POLST) is a medical order that addresses emergency care wishes for seriously ill individuals. POLST is not for everyone. It is intended for individuals in poor health who want to have the choice not to pursue selected treatments in response to a health emergency2.
Inspiring individuals to complete an advance directive supports individual choice and autonomy regarding personal care preferences at end of life. Once complete, advance directive copies are provided to the people close to you, such as your health care agent, loved ones, and your health care providers. If advance directive changes are necessary, share those changes and provide an updated copy of the advance directive to those that matter to you. For additional information visit www.honoringchoicespnw.org.
Death is not a fun topic, but failing to talk about end-of-life plans results in a lack of preparation and exacerbates emotional strain when a loved one passes away at home.
If your loved one opts to live out their final days in their house, or if you care for an elderly spouse or parent who’s in the advanced stages of Alzheimer’s disease, they could die at home. Are you prepared? What are your loved one’s end-of-life wishes? Would they choose to pass away at home? Is hospice care an option, or is a hospital setting a better choice for your circumstances? Medicare often pays for hospice care.
Why some people prefer to die at home
Passing away at home is often preferred by critically ill or older individuals. According to the Stanford School of Medicine, studies indicate that 80% of Americans would choose to pass from this life surrounded by what’s familiar to them, preferably at home. However, many don’t get their wish. Only 20% of Americans die at home, while 60% die in acute care hospitals and 20% die in nursing homes.
People prefer to die at home for various reasons, but perhaps control is a primary contributor. The family can manage who comes and goes, providing an opportunity to gather, reminisce, and properly say goodbye. Caregivers administer palliative care in a comfortable, familiar environment rather than one that is foreign and starkly sterile.
Hospice care will assist with pain management, and no heroic actions are taken to resuscitate the patient, who is allowed to slip away. Depending on the laws in your state, you may be able to keep the body at the house for a period of time, and some families may choose to have the funeral at home, too.
How to prepare for a death at home
Preparing to die at home is a process that must occur before the person’s final days. If you or a loved one has been diagnosed with dementia, it is essential to decide in the early days of the condition, while the decision is still yours to make. Caregivers and loved ones, acting as surrogates, can carry out your wishes, but only when they know what they are.
An advance health directive is crucial to securing end-of-life wishes. It’s a legal document containing the patient’s desires. If the patient is incapacitated, the document expresses their values regarding end-of-life processes. These include whether first responders and healthcare professionals will administer CPR, if the patient will donate organs, and what comfort measures will be in place during the dying process.
When a person dies at home unexpectedly and without an advance directive, first responders typically can’t pronounce them dead, as required by law. Paramedics transport the remains to the nearest hospital emergency room, where a doctor will pronounce them. If hospice is in place, the hospice nurse can pronounce the person’s death at home, and the family arranges for a funeral home to remove the remains.
Without hospice, a living will, or an advance directive, the family must call emergency services when their loved one dies at home. Paramedics, possibly firefighters, and police officers will arrive at your home, but only a doctor or coroner can pronounce death.
Understand that without the proper documents in hand, paramedics have to follow protocol and will often begin administering emergency procedures and transport your loved one to a hospital where a doctor with authority to pronounce can do so. There are exceptions to this rule depending on where you live, and in some cases, paramedics are permitted to pronounce.
Some states require an autopsy when a person dies at home. If the deceased was advanced in age, an autopsy might not be necessary. In either case, you must make arrangements for transportation to a funeral home or crematorium. Don’t be shy to ask about cost. Funeral homes are required by law to provide that information when requested.
There is much more to preparing for death at home than what we can briefly discuss in this column, including the emotional and spiritual aspects and mourning through the grieving process. Mourning is necessary and healthy, and it’s futile to try and skip it. Grief will rise to meet you in unexpected places and at random times. A grief counselor, pastor, trusted friend, or family member can help you through the mourning process. You don’t need to mourn alone.
As a thing that most people try to avoid, death isn’t a common topic of conversation. After all, discussing it requires confronting its inherent inevitably—but avoiding discussions surrounding it doesn’t just bring blissful ignorance, either. In fact, this tactic can leave your loved ones in the lurch when death does arrive. That’s why estate-planning attorneys suggest considering in advance how you’ll discuss your plans for death with your family, and above all, making a point to do so.
Death comes along with an emotional and logistical cascade of concerns for those close to the person who passed. While working with a palliative-care professional or death doula once death becomes imminent can certainly help with the emotional side of things, creating an estate plan ahead of time mitigates stress related to the logistics. “This is why we always say every adult should have a will,” says estate-planning attorney Rosalyn Carothers, JD. “For one, that allows you to direct what happens to any of your assets, and two, you’re making it easier and less expensive for your family members to help, as you’d have seen fit.”
“If you indicate clearly [to family members], ‘Here is my plan,’ then everyone can get on the same page, and it’s harder for someone to feel like they’re getting cheated.” —Patrick Hicks, JD, general counsel at Trust & Will
But, because of the inherent sensitivity of a will—deciding who gets what and what goes where—creating one only gets you halfway to solid death preparations. Learning how to discuss your plans for death with loved ones is the other half, both so that they know exactly where to find all the relevant documents in the event of death, and also so that they can help ensure your wishes are carried out effectively, without confusion, disagreement, or unwelcome surprises. “If you indicate clearly, ‘Here is my plan,’ then everyone can get on the same page, and it’s harder for someone to feel like they’re getting cheated, so to speak, when push comes to shove,” says estate planning attorney Patrick Hicks, JD, general counsel at Trust & Will.
Below, estate-planning attorneys share the key elements of end-of-life planning to talk about explicitly with family members, so that everyone knows what to expect should the unexpected occur.
What to discuss with family about end-of-life issues, according to estate planning attorneys
1. End-of-life wishes
A handful of both pre- and post-death desires fit into this category—which covers what you’d like to happen in the event that you’re incapacitated or terminally ill (the details of which can be legalized in a living will) and how you’d like your body to be handled should you pass (like your preferences for burial or cremation, for instance). “You really want to let folks in your life know, ‘Hey, if I’m in this circumstance, do this or don’t do this,’ regarding life support, in particular, so that loved ones feel like they are intimately aware of what you would’ve wanted,” says Carothers.
Even if it’s all legally delineated in your estate plan, talking about these desires openly can spare the people in your life who survive you from some very difficult conversations, says Hicks. It’s also worth mentioning that, in the same conversation, you should tell loved ones exactly where they can find the documents detailing these wishes, so that there’s no need to search for them if and when the time comes.
2. Who will handle what when death nears
Once you start considering your plans for death, you’ll quickly run up against what Carothers calls the “who’s its” and the “what’s its.” This refers to “who” in your life is going to handle “what,” logistically speaking, when you’re about to pass and afterward—which is another big source of potential death-related conflict that can often be avoided with a conversation.
The most contentious roles to consider are who you’ll appoint as your financial and health-care agents under your powers of attorney, or the person (or people) you’re choosing to handle your finances and taxes and your medical decisions, respectively, whenever you become unable to do so. “Sometimes, people don’t want to speak to their kids or siblings about this because they don’t want to hurt anybody’s feelings,” says Carothers. “But, it’s better to let these loved ones know upfront who you’re choosing for what and why.” That way, there’s less chance of a dispute after the fact.
The same goes for clarifying whom you’ll be naming as the executor of your estate (once you have a will in place or while you’re creating one). This is the person who will settle your accounts, manage your personal assets, and disseminate the right assets to the designated beneficiaries of your will after you pass. Talking about this with family members lets everyone know whom they should turn to for any will-related matters post-death.
3. People to call in the event of an accident
Chances are, you may not even know exactly who among a parent or sibling’s friends or acquaintances you should contact directly should they become incapacitated or die. And if you do, it’s even likelier that you don’t have their contact info handy. “Nowadays, everything is just saved in everybody’s cell phones, but what happens if you lose a loved one’s phone in an accident or you just can’t unlock it?” says Carothers.
That’s why she suggests everyone keep a list of the few close friends whom they’d like to be contacted should something happen to them, along with their contact information, and inform loved ones where they can find it in the event of an accident. Also on that list should be the name and contact info of your accountant and homeowner’s insurance agent, if either or both applies, adds Carothers, since these are usually the most important people to reach in any situation where someone is nearing death.
4. Sentimental assets
Surprisingly, it’s often the sentimental pieces of property that tend to create the most tension among a decedent’s family members, says Hicks. “With valuable assets, a lot of the time, it gets quickly resolved, either according to the specific plan in place, or in a way where things get divided equally,” he says. “But it’s the things that don’t have a lot of economic value, but that have sentimental value which are typically not accounted for in a will, and then get fought over.”
That could mean a family photo album, an antique, a special piece of artwork, or any other kind of family heirloom that can’t just be cut up into parts and divided equally. “Not having a conversation upfront about who’s going to get which of these items often leads to disputes and disagreements,” Hicks says. Talking explicitly about sentimental pieces in advance can certainly get ahead of these potential arguments, though Carothers also suggests checking to see if your state allows you to file a memorandum along with your will that can include a written file of all these items, listing the person’s name to whom each should go.
While we were celebrating Passover and Easter with our loved ones and family, National Health Care Decisions Day came and went. It was on Saturday, April 16. It was designated to remind us that no matter our age, planning for the inevitable day when we cannot make our own health care decisions is more than a good idea; it is essential. Not planning for that inevitable event is like flying a plane that you don’t know how to land. The only people who don’t need a plan are those who meet their demise like my father: standing and talking to a friend one minute, and in an instant was lying on the floor – dead. If you are sure that is your fate, then don’t waste your time doing any planning. However, be advised that the ultimate result of not providing end-of-life instructions is that when you find yourself in the hospital toward the end of life (as many people do), the hospital ‘care protocol conveyor belt’ takes over and you will be hooked up to whatever life-support is available to keep your body nourished and your heart pumping.
What Do People Want?
Let’s look at some facts and some history about end-of-life care. Studies on end-of-life preferences demonstrate quite clearly that the vast majority of people want to die at home. However, because of a lack of willingness to talk about preferences for end-of-life care and advance care planning, over one-fifth of patients still die in the hospital. If your wish for the end of your life is an extended stay in an acute care unit of a hospital, hooked up to machines designed to keep you alive, then by all means ignore all of these statistics and opportunities to make other choices. My friend Mitch, a retired ER doc, told me how frequently he watched as family members argued about whether to keep their elder relative alive through extraordinary measures (feeding tube, mechanical ventilation, urinary catheterization, dialysis, etc.) or to let them die a more natural death. Often these well-meaning relatives were confused about what the elder wanted, or remember hearing it differently than another relative. In the end, and in the absence of written instructions, the final decision was almost always “keep her alive.”
End-of-Life Care Will Cost You
For those who still are not convinced that planning is the best way to ensure an end-of-life experience that is under your control and as comfortable as possible, you may also want to consider the cost implications of hospital care versus palliative or hospice care at home.
End-of-life costs for people with chronic diseases can be $57,000/yr. and up. Medicare will generally pick up most of that, depending on medigap coverage, pre-approvals and cooperating providers, and how long you are expected to live, but one study found that out-ot-pocket expenditures for end-of-life treatments and care are still averaging close to $12,000., with a range that goes up to close to $100,000. in the final year of life.
Medicare has covered hospice care since 1983 and usage of this benefit has slowly been increasing. In 2018, for example, 50.7% of those who died had taken advantage of hospice care for their final weeks or months of life. The savings associated with using hospice, rather than in-hospital care or a nursing home is estimated to be $117.-$400. per day.
The best-known way of creating an advance directive (also known as a healthcare proxy or power-of-attorney for health care decisions), is to work with an attorney who specializes in estate planning. They will suggest that you create a full set of end-of-life documents, which usually includes a will, a power-of-attorney for financial decisions, an advance directive, and possibly a trust. They will give you a worksheet and have a series of discussions with you about your preferences for end-of-life care and who you would choose to make decisions for you about your health and finances if you could not make them yourself. In addition to denial about the urgency of creating these documents, the cost of a complete estate plan can range from $1000-$8000., depending on how complex it needs to be.
Quick and Easy Advance Directive Online
If you are now convinced that advance care planning is important and necessary but you aren’t ready to do the full estate plan, there is a way to produce and file just the advance directive document, online – and it’s free! Since 2009, Vital Decisions has worked with individuals through health insurers to set up their wishes, should they be unable to communicate their wants at the end of life. Today, in addition to their insurance partners’ clients, they also offer a free program for the general public. It’s called My Living Voice and it guides you through three stages of preparing an advance directive: 1) setting a healthcare proxy 2) Talking through values 3) Goals of Care and Treatment wishes. So check it out, in honor of National Health Care Decisions Day, and give your loved ones the peace of mind of knowing what you want at the end of your life. Plus, it will give you peace of mind that you have communicated your final wishes to those who will be making decisions for you when you cannot.
There are so many things to do every day, an almost-limitless amount of “low hanging fruit” items to cross off the list. It’s easy to put off thinking about your health care wishes.
There are many more enjoyable things to plan and ponder, while considering your health care wishes can feel like a chore. When given a choice between planning a vacation or outlining your end-of-life wishes, it’s easy to pick the more fun, less distressing task.
You also may procrastinate because you believe these decisions can wait for a more appropriate time in the future. Unfortunately, the right time and circumstances never seem to line up.
Documentation of your wishes
Thinking through and documenting your health care wishes tells your family and health care team what kind of care you want if you are too ill to express your wishes yourself. This could occur if you’re terminally ill, seriously injured, in a coma, in the late stages of dementia or near the end of life.
Some decisions that you should document include when you want to be resuscitated by CPR, when and for how long you want to be placed on a mechanical ventilator, or if you want to be fed through a feeding tube.
Record your wishes in a legal form called an advance directive. This document isn’t just for older adults. Anyone over 18, regardless of state of health, can complete an advance directive. It’s only activated if or when you are incapacitated and cannot make health care decisions.
One type of advance directive, a power of attorney for health care, is preferred because it makes your care wishes known and designates a person to make decisions for you if you cannot speak for yourself. This person is called a “health care agent.”
When selecting your health care agent, remember this story:
Two leaders pondered a difficult decision and were united in their approach. But soon, the second leader started to second guess the decision. The first leader said to the second, “Now is not the time to be a fence straddler.”
As you select your health care agent, pick a person you trust to follow your wishes and hold firm to the decisions.
You can update an advance health care directive or power of attorney for health care at any time, such as after a new diagnosis, a change in marital status or if your thoughts about end-of-life care evolve.
Get better outcomes
Procrastinating health care decision-making is a serious matter, so the sooner you begin, the better the potential outcome.
In some cases, life can be prolonged using advanced technology like ventilators, vasopressors and surgery. It’s great to be an educated health care consumer and understand the available treatment options, but it’s also important to remain objective, and listen to and heed the advice of your health care team.
If your health care team is unsure of your wishes, they may insist on prolonging care or performing invasive treatments on your behalf. These actions can have serious negative side effects and result in low quality of life.
Documenting your wishes early ensures that you will get the medical care you want and need while avoiding unwanted heroic measures that may be harmful. It also relieves unnecessary suffering, and eases your family and friends of decision-making burdens during moments of crisis or grief. What a gift this is for them.
Tips for difficult decisions
These conversations and decisions are not easy, but they are important.
Here’s my advice on tackling difficult decisions with your family and friends:
Don’t kick the can down the road.
Sometimes getting started is the hardest part. Years ago, I drove a vehicle with a manual three-speed transmission on the column. Unlike the automatic engines found in cars today, you could give this car a small push downhill to start the engine. In the same way, some people just need a little push to get started.
Perhaps you feel the day will never come that you face a serious injury or illness or that you will die in your sleep. But nearly every family is affected by a serious illness or injury at some point. If decisions are put off and not documented, a well-intentioned but uninformed family member could make decisions that don’t align with your wishes. I have found this to be the case on many occasions. A rolling snowball in the form of unmet health care decision-making can lead to a big mess that can become a proverbial avalanche if left unheeded.
Don’t decide to do nothing.
Inaction is still an action. If you refuse to make difficult decisions in health care, you are still deciding, but it’s much riskier. It’s like gambling on a roulette wheel. You don’t know where the ball is going to stop. Instead of taking action to improve your odds, you are just hoping for a good outcome.
You take control by expressing your wishes and choosing a responsible health care agent in an advance directive. These actions guide your roulette ball by adding flappers on the wheel that align with your desires. Doing so can make the difference between comfort or chaos for you, your health care team and your family.
Keep points simple yet specific.
As you complete your advance directive, you will be advised to consider all options. This can feel overwhelming. The key is to keep it simple because there is no way you can cover every possible scenario.
Too often, advance directives are too generic or too detailed. I recommend a happy medium where some key themes are outlined and cover a myriad of scenarios. Keep it simple when you can.
Let professionals guide you.
When you are ready, find a health care professional to guide you through completing an Advance Directive booklet. Social workers and chaplains in health care organizations, along with faith leaders, community service workers in local communities and volunteers, are trained to assist you. Your primary care provider also can assist. These professionals will help you work through the decisions, but they won’t tell you what to do.
Advanced planning and outlining your wishes before you need the care gives you the opportunity to communicate your wishes with your family. Talk with them about your advance directive and health care wishes, along with your rationale behind the decisions. Give a copy to your health care agent and health care team.
It’s prudent to be a well-informed patient as you outline your health care wishes. They are not only life decisions, but also they’re life-altering.