What do end of life medical decisions look like?
End of life and care decisions of our loved ones are highly emotional, can be confusing, and often full of difficult decisions. What can this look like for a family? Let’s walk through a very common scenario.
Rosa knew from experience the difficulties and expenses of watching a loved one die. She was totally devoted to her husband as he suffered and died from cancer years earlier. The idea of high medical bills, “tubes” and pain upset her, and even though she had not viewed her husband as a burden, she feared being one to her family.
Years after her husband’s death, Rosa was elderly and hospitalized with a severe urinary tract infection which made her dehydrated, weak and confused. Staff was having trouble communicating the treatment options and Rosa seemed full of confusion and fear. The question became: how do we make good treatment decisions for a patient that is having trouble understanding what is going on due to illness and fears?https://www.usccb.org/committees/pro-life-activities/advance-medical-directives-planning-your-future
Why Prepare for the Inevitable
Nobody likes to think about the end, but it’s important we do it. If you have wishes, you MUST make them known while you are able – or those decisions about the end of your life can very likely be made by someone you do not know. I realized I needed a will/plan when I reached the summit ridge from the Old Chute while climbing Mount Hood. Just the week before someone had caught their crampon and fell to their death exactly where I was perched. Besides medical issues, accidents can happen in the blink of an eye.
Other reasons to be prepared:
- A sudden medical condition may make it impossible for you to communicate or even make your own medical decisions. Rosa knew her wishes, but her rapidly developed medical condition made her unable to understand or make clear decisions about her own care. Serious infections, comas, brain injury, heavy painkillers, or intubation may make communicating or understanding treatment options difficult. Researching your own options may not be possible. Who will make those decisions in life or death situations when you cannot reasonably answer?
- If you do not make your wishes clear – and make clear who is to make them – someone else will make them for you. That someone might be someone you don’t know, someone who isn’t very qualified to make medical decisions, or maybe even by someone that does not care or even like you.
- It’s an emotional gift to your loved ones. When serious illness becomes a reality (especially in the case of an accident), people who love you will be emotionally distraught and likely struggling. What should be done? Who decides? Having your wishes clearly stated before hand makes decisions easy and avoids conflict between siblings/caregivers about what should be done.
- It avoids life-long family division. Having clear wishes and one person picked to make the decision means the decision making process is clear. Without clear wishes and a decider, people who are normally rational can become quite emotionally motivated and it is VERY common to create life-long family divisions between your loved ones. People come to blows over mom’s care decisions and siblings will never set foot in the same room again because person X ‘killed’ dad.
- It is a practical gift. Imagine if you were unconscious and you are in a coma. Would someone be able to find your medical info, insurance information, have access to your bank accounts and know how to pay your mortgage/rent/bills, call your boss to let them know what happened? Do they know the code on your phone? Can they basically cover your life until you wake up?
- Relying on a form advanced directives from hospitals/government usually isn’t enough. Most advanced directives from hospitals or the government are dangerously inadequate from a legal standpoint. Did you know a ‘Do not resuscitate’ order doesn’t just mean they won’t zap you back if your heart stops – but could also be interpreted as not even giving you the Heimlich maneuver or CPR if you are choking to death? Most of the other form versions (especially the Oregon advanced directive) have language so vague and open to interpretation as to be useless and will inevitably lead to court battles.
Things you need
One of the things you’ll learn quickly about end of life planning is that you’re going to need a number of tools besides just a will and an advanced directive. You also need people to ensure those are carried out – and if you have specific wishes for your burial and earthly things – some legal documents.
DISCLAIMER: I’m NOT an attorney, estate planner, or anything else. This is just the information I have gathered and learned in my own estate planning. Please consult a legitimate estate planning lawyer to set this all up. Estate planning isn’t just for rich people – it helps every situation.
Power of Attorney/Medical Power of Attorney – this person acts for you while you are alive. While not strictly required if you have an advanced directive – it’s an extremely good idea since no advanced directive can cover all the possible medical situations that could come up. This person is usually set up to handle your medical and/or financial matters. This person should be bound to execute and follow your advanced directive. General power of attorney’s should also be provided with access and information about your medical accounts, bank accounts, pay your bills, how to contact key people (boss, etc). Anything they need to act on your behalf while you are incapacitated. Work with a good attorney to set up a power of attorney. It’s worth having language that only gives them power of attorney during certain conditions (like medical or other incapacitation). You need someone you trust – since they will have full access to your financial assets and speak for you medically. A key point is that their powers end at death. This means you need something/someone to direct things after you die.
Trust – This is the legal entity that lives on after you die. Bank accounts, homes, cars, retirement accounts, care of your underage children, and other major assets should be named in the trust. You’ll need an attorney to set up a trust and get assets assigned to the trust. You’ll also need to add the trust name to bank accounts, retirement accounts, and homes in order for the trustee to have control over them. Having a trust and will helps your loved ones avoid the taxes, headaches, and possible years of expensive court costs that can happen in probate court. A trust can ensure your children are taken care of. It also helps deflect issues of greedy heirs. You would be SHOCKED how many relatives, heirs, bill collectors, and random people believe they have a right to your assets when you die. If you have assets, heirs and people are highly likely to show up out of the blue and file lawsuits to get ‘their fair share’. It’s a disgusting but very real risk. A trust protects your assets, your heirs, and prevents the majority of these lawsuits.
Will – This states the wishes you have – and usually gives direction to your trustee about what is supposed to be done after you die. If applicable, it tells them what to do with the assets in your trust and your wishes about where/how to have a funeral or burial wishes, etc.
Trustee – When you die, your power of attorney has no more powers. The trustee is in charge of the trust and carries out your Will/trust directives when you die. This person should be a very trustworthy and informed person about estate matters. They will need to handle any legal, tax, and lawsuit matters against your estate if they arise. Often you can appoint a law office to be your trustee if you don’t have someone that would be up for the task.
Advanced directive – An advanced directive states your medical and end of life care if you cannot answer for yourself. It should minimally cover what should be done in case of long-term incapacitation, spell out the kinds, extent, and limits of medical treatment you want. There’s lots to consider: ensuring you get the sacraments before death, organ donation, resuscitation, palliative care options, where you want to be cared for/live, etc. A good lawyer can help you specify as much of this as possible – though there is no way to cover all possibilities. That’s why appointing a good medical or standard power of attorney that knows you is important to cover the gaps.
Back to the story
Rosa’s mother had wisely designated her daughter Teresa to be appointed as her health care agent after Rosa’s husband died. This information was on file with the hospital. Teresa was called in to met with the medical staff who helped her understand the proposed treatments. Time was of the essence as the infection got worse but now Teresa was there to help make the treatment decisions.
Because a medical representative was picked, it was clear who was to make the decision and that meant the decision could be made quickly. Time is often of the essence in serious medical situations – so having the contact picked up front is important. Rosa didn’t have an advanced directive, just a list of wishes. But Teresa knew those wishes and was named to answer questions, so Teresa could speak for her.
Many hospitals now have the ability to upload advanced directives and medical emergency contacts. Do this! Having worked as a chaplain in a hospital, when someone is brought into an ER, the first things they do are check your personal effects for is an ID or insurance info. If your information is in your insurance or medical record (which can be looked up with your drivers license) – they can know immediately who to call and what to do.
Catholic-based Advanced Directive Resources
It’s important to know there is no definitive or easy ‘answer key’ to what one should do in every medical situation – even with Catholic-based advanced directives. Every medical case is different and nuanced.
A Catholic based advanced directive will usually have clear statements about your specific wishes; but also contain general language to cover a broad range of situations. You, and those who will care for you, are going to have to read and become educated on Catholic social teaching relating to end of life matters as well as basic legal matters surround estates. But you do not need to do this alone – there are parish priests and diocese resources available. It’s also a good idea to pick an estate lawyer – even if you don’t need one now. All of this reading takes time. Don’t wait.
For medical answers in the advanced directive, the good news is determining what to do are based around a few core principles: ordinary vs extraordinary treatments and determining burden/benefit analysis. More on that below; but do not wait until there is a critical illness because reading all of this takes some time.
Legally, one should also not rely on simple hospital or state form advanced directives if possible. Most form advanced directives from hospitals and government entities are legally dubious documents. At best, they are ‘good faith’ documents that work so long as there are no conflicts between loved ones about care. Instead, work with a lawyer or your diocese to get a better crafted document. Make sure your doctor has a copy, your medical record has a copy, and your family knows about it and where to find it.
Example: A vague ‘Do not resuscitate’ order doesn’t just cover having a terminal condition. It also means they might not shock you back on an operating table if your heart stops due to a fluke but you could have certainly survived with a simple resuscitation. It might even be interpreted as meaning to not give you the Heimlich maneuver or CPR if you are choking to death on a peanut in the hospital cafe.
This is not just academic, I had to answer a number of questions about if I was to be resuscitated for a relatively minor outpatient procedure in 2024. I already had an advanced directive on file with them as well as clear medical contact. But even then, they confirmed everything and put a wrist band on your arm with your wishes. This was the wrist band I got when I indicated I wanted full resuscitation/saving assistance if a complication had arisen during what was essentially routine care. But if something had gone wrong (like I had choked on something during the procedure), a DNR (Do Not Resuscitate) order might have meant they would have let me die when I could easily have been saved.
Catholic Moral Principles: ordinary vs extraordinary
So how do you make medical decisions when the time comes? What wording do Catholic advanced directives have?
The doctors told Teresa that Rosa’s infection was serious. They recommended that she stay hydrated and nourished intravenously while issuing a course of antibiotics. This did mean IV tubes to deliver medication and hydration/nourishment. It also meant she might be on monitors for a few days. Rosa didn’t like the idea of tubes and monitors – and didn’t want to be a burden. How far should Teresa go? How does she decide?
Most advanced directives say that all ‘ordinary means’ should be used to preserve your life so long as they do not impose an excessive burden. What are ordinary vs extraordinary means?
Most people think of ordinary treatment as simple procedures and extraordinary treatment as experimental ones. This is not what those mean in making moral decisions. An extraordinary/experimental treatment that offers good chance of success without excessive burden might be completely reasonable and appropriate morally ordinary means. While an ordinary treatment with no hope of success might be considered extraordinary means.
Unfortunately, the language of “ordinary” and “extraordinary” means can cause confusion for those unfamiliar with the Catholic moral tradition. Many people use these moral terms in a manner similar to the way such terms may be used in medicine — that is, ordinary or extraordinary forms of medical treatment, where “extraordinary” becomes equated with procedures that are rare or experimental. This is not the case in terms of the moral meaning of these words. What distinguishes “ordinary” from “extraordinary” in Catholic moral theology is not whether the treatment is “ordinary” in the sense of being normal or frequently used, but rather whether the treatment is beneficial (ordinary) or excessively burdensome (extraordinary) to the patient. Thus an ordinary treatment in the medical sense can be “extraordinary means” in this moral sense if it is excessively burdensome or poses excessive risk for the patient. For example, many forms of chemotherapy would today be considered “ordinary medical care” for cancer patients. For a particular cancer patient, however, especially at the late stages of cancer, that same treatment may become “extraordinary means” because it can no longer benefit the patient and causes a great deal of discomfort and painhttps://wholeperson.care/ordinary-and-extraordinary-care
An important distinction/concept relating to this topic of extraordinary means is euthanasia – the purposeful withholding of treatment to end life. Euthanasia is morally wrong and an affront to life; but deciding to discontinue a treatment that offers little hope is not considered euthanasia.
At the beginning of an illness a variety of medical interventions are appropriate. However, there comes a time with serious advanced illness when continued attempts at a cure are no longer of benefit to the patient. This acknowledgement is not abandoning the patient but rather acknowledging the human condition and the limits of medicine. St. John Paul II, in his encyclical, The Gospel of Life, explained:
Euthanasia must be distinguished from the decision to forego so-called ‘aggressive medical treatment,’ in other words, medical procedures which no longer correspond to the real situation of the patient, either because they are by now disproportionate to any expected results or because they impose an excessive burden on the patient and his family (§ 65.)https://wholeperson.care/ordinary-and-extraordinary-care
Determining what is excessive can be difficult. It can involve efforts that cause terrible pain. For example, when someone is in late stage, incurable cancer – one does not have to continue a painful course of chemotherapy that offers almost no chance of a cure. There is no moral mandate that states one must take every possible action of prolonging life if it causes great physical suffering or offers almost no hope for success.
One thing that cannot be done, however, is denying food and water to starve the person to death. Even if it must be administered intravenously as in the case of Terri Schiavo (see info below). However, hydration/nourishment may be discontinued in very late stages of illness when the body can no longer process food and it becomes an excessive burden itself and death due to the underlying illness is imminent long before death by malnutrition is expected.
It’s worth it to start reading at the top. The Vatican has published excellent documents Humanae Vitae about the value of life and Evangelium Vitae (section 64 on end of life concerns)
Catholic social teaching about end of life matters is also reasonably documented on the USCCB website.
Secondly, your next best options will be to check the most recent documents for your diocese and/or consult your priest/diocese office to get recommendations to lawyers and documents that can craft an advanced directive in line with Catholic teaching.
There are also sites such as the National Catholic Bioethics Center and the Catholic End of Life sites. These should not be considered as definitive; but often have information links and links to resources of diocese in many different states. There’s some sample advanced directives and lots of great information. Some diocese do much better than others. Some haven’t updated their documents for some time – so be cautious. Some dioceses may have tuned their sample documents to address the specific laws of that state, but the teaching behind them is the same. You might find it useful to look at different states and start with one you find matches your wishes best; then consult your own local priest/lawyers.
This all in action for Rosa
The doctors told Teresa that Rosa’s infection was serious and required quick intervention. But by ensuring she was hydrated and nourished intravenously while issuing a course of antibiotics, there was a very high probability of a full recovery. Although Teresa knew Rosa didn’t like tubes, the treatment should not cause undue burden and were very ordinary treatments for that kind of illness. The tubes and monitors should be temporary and provide a very good chance of recovery. Teresa agreed and Rosa’s treatment was administered.
Teresa was grateful that the medications, nutrition and hydration that Rosa was given, all through “tubes,” but it cured her infection. After a week or two, Rosa improved greatly and had the IV lines removed. She was soon released from hospital and is as active as she has ever been. Rosa and Teresa realized that there are certain situations that can’t be anticipated when illness comes. They learned it was best not to refuse future care just because of how it is administered but that may turn out to be very welcome.
This is one of the final points. A good advanced directive usually doesn’t spell out exact treatments one does or doesn’t want (no tubes, no resuscitation, etc). Instead, Catholic advanced directives rely on the notion of ordinary and extraordinary means. This allows for a serious or even experimental treatment that offers good hope for a cure to be administered, but also allows that same treatment to be rejected if it were to offer no hope for the patient.
Some good links:
- Vatican documents
- USCCB guides
- State-by-State advanced directives and diocese forms
- Note this is from 2007 and somewhat dated; but still accurate and good information. The directive covers limited topics but is valid. https://www.evdio.org/uploads/2/6/3/0/26308718/health_care_directive_web_version.pdf
- Other good resources:
- Ethical and Religious Directives for Catholic Healthcare Services (6th edition is the latest). Chapter 5 Issues in Care for the Seriously Ill and Dying