By Kira Lallas
Update 4.25.2020 An important Executive Order, 202.14, has been issued by Governor Cuomo that allows remote witnessing of health care proxies, among other documents, until May 7. This order will assist New Yorkers in completing advance directives to guide medical care in the face of the COVID-19 pandemic. Click to download.
As a social worker, I help patients and their families make sometimes difficult decisions about their choices at the end of life. One of the confusing aspects of talking about “Advanced Directives” is that that term refers to a few different documents — some of them are binding medical or legal documents, and others address a general philosophy of care, or emotional and spiritual, aspects of end of life care.
Here is a brief explanation to compare some documents you might explore as you consider options for end-of-life care and want to make your wishes more formal and explicit.
One of the hardest parts about thinking into the future of what health care we’ll need and what choices we want to make, is that it often means guessing at an incredible range of abstract possibilities. Even if we are living with chronic or life-threatening conditions, there can be so many complexities to the body and other circumstances, it is hard to think through every avenue. On top of that, feelings about our bodies and our ideas of what “quality of life” means may change over time. I have so often heard people say they absolutely would not want to live with this or that condition, only to find (when the circumstance arrived) that they found the experience to be different or more manageable than they expected. Some may even feel a sense of gratitude for the changes it brought to their life, to their loved ones, or in themselves. When making health care decisions, we may also consider the feelings of our loved ones. Common questions are:
- Who will help me at certain points of need?
- How would my loved ones feel about my making a certain choice?
- What impact will my decisions have on my loved one’s life and family?
While these questions are an inevitable part of our thinking, it is nearly impossible to plan for unexpected directions.
I knew someone with advanced ALS who was being cared for by his young adult daughter as the illness progressed. The plan had been for her to provide care for a short time, and for him to go to an assisted living facility. He filled out a MOLST early on with limited treatment options. As his needs over time increased, he decided that his primary goal was to stay home and his daughter agreed to continue caring for him, even though it meant she could no longer work outside the home. While he had thought life wouldn’t be worth living if he could not take care of his own eating, drinking, toileting, and other daily needs, his issues with swallowing and talking came sooner than expected and he ended up electing to go against the choice he’d made on his MOLST and decided to get a feeding tube. The medical procedure came with complications that brought him back to the hospital many times and there were moments he regretted getting the feeding tube. However, emotionally it was helpful for him to have the additional time with his family. He was grateful for and needed his daughter’s help, but was concerned about her financial future and their relationship. He wondered if she would resent him, and what it would mean for her to see him this way: drooling and unable to feed himself. He worried about the emotional impact of asking his daughter to do all the feeding tube care, helping him go to the bathroom, dressing him every day, , repositioning his body throughout the day and night, and more. He was afraid she would be scared, ashamed, angry or abandon him.
As their social worker, I was able to help them have challenging conversations. His daughter shared with me, and then with him, how she wanted to make him proud of her, and show him how much she loved him and appreciated him, through caring for him. She felt she had matured as a person through the experience, and realized how important it was for her to have her Dad see her grow into an adult before he died. The time they had together through this illness let her show him that. She also found herself in new territory in her spiritual life, feeling a vague connection strengthened and made real for the first time. So while this gentleman and his daughter had both been worried about the other, the experience became one through which they connected more deeply and got to share on deep and emotional levels through his death that they were both so grateful for.
This story beautifully illustrates how complex our emotional and physical stories are, how layered and nuanced decisions become, even when they seemed so clear at a previous time. There are many stories to illustrate just how differently things go than we expect, to show how formal documents have helped give quality of life, just as much as to ignore it. So, while having some documents and considerations in place, these are fluid questions that need attention throughout our life and in an ongoing way with those we love and trust.
The practical part – what and how different forms are used in New York State:
- Health Care Proxy – Legal document designating a person who will make health care decisions in the event you are unable to make them yourself. You can designate a Health Care Proxy with two witnesses, and you do not need a doctor or lawyer to weigh in. The Health Care Proxy can be designated without that designee even knowing. It is only heeded if the medical system encountered has a copy of it in front of them during a medical event (this is why they are so often put on the refrigerator of a home or carried with a person who thinks they are likely to need it).
- Medical Orders for Life Sustaining Treatment (MOLST) – A Doctor’s Order stating your wishes for the end of life in the event you cannot make this decision yourself. If you do not have a Health Care Proxy, this document guides medical decisions and can arrest the momentum of our medical system’s obligation to do absolutely everything to sustain life. If you do have a Health Care Proxy, this document can guide their choices on your behalf. This is a “Doctor’s Order” and needs a physician or Nurse Practitioner’s signature as well as two witnesses to be a legal document. This document has room for the physician or Nurse Practitioner to review and update at any time, or at least every 6 months. So this is a document that someone should go over with you in detail who can discuss your specific medical situation, likelihood of these events, and possible outcomes specific to you.is a document to complete when these questions are more imminent. They ask about intubation, artificial hydration and nutrition, antibiotics, and also a general question about philosophy of care. It is only heeded if the medical system encountered has a copy of it in front of them during a medical event (this is why they are so often put on the refrigerator of a home or carried with a person who thinks they are likely to need it).
- Do Not Resuscitate Order (DNR) – A legal document that was subsumed into the MOLST form when NYS adopted this more comprehensive form. A DNR can be a stand alone order as well. The DNR in either form comes into play when a person’s heart has stopped beating and they are not breathing (ie the body has died), and the person wishes to let the body die rather than have CPR or other life sustaining measures carried out.
- Living Will – A document you can give your Health Care Proxy that describes some of your wishes for the end of life. This can be a helpful tool to reflect on your wishes, but is not binding in itself. A lawyer can draw up a document which narrates your choices to areas of care that commonly arise, and then can be used by your Health Care Proxy to help them make decisions on your behalf. It would only be used by a medical professional and change the course of treatment if you were unable to make decisions on your own, a Health Care Proxy or default was unavailable to make choices, and the document was in the hands of medical professionals considering your care.
- 5 Wishes – An easy-to-use document written in everyday language that helps you reflect on your spiritual and emotional values when you imagine the end of life.
- Power of Attorney – A legal document that gives a person the power to use your money with your authority. If finances are complicated or there are exceptions to a person’s use of your money, this is often drawn up by a lawyer. There are simple forms that just need a notary to sign off on in the presence of the person giving the Power of Attorney and the person(s) they are giving it to. This Power is only active until the person who gave the power is deceased.
- Executor of a Last Will and Testament – The person designated in a Will drawn up by a lawyer to handle financial affairs after a person has died.
If there is only one point you take away from this brief guide, please let it be this: The most important decision you can make is that of picking a Health Care Proxy.
Because it is difficult to know all the circumstances that will arise before the end of life and the choices that will need to be made, it is important to have someone who you trust and who knows your core values so that they can apply that knowledge to any specific situation that comes up. You will continue to make your own decisions unless you are unconscious or deemed by medical professionals to be incompetent to make decisions.
Your Health Care Proxy will only make decisions when you no longer can. In this situation, that means you will not be able to talk over options so it is very important that they know you deeply and that they will respect your values and wishes over their own.
In New York State, if you cannot make your own decisions, and you do not have a Health Care Proxy, there is a determined order of who they will look to for decisions to be made (essentially a default Health Care Proxy). The order is: Spouse, Adult Child, Parent, Adult Sibling, Friend. If you do not have a Health Care Proxy, and a medical decision needs to be made, know that someone close to you will end up in that position anyway . Also, no matter what choices you have written on paper, your Health Care Proxy can override any decision and can make choices without regard to any other family member, friend, or medical provider’s opinion. This reality means that a deep, thoughtful conversation with your proxy is especially important.
Again, it can be a good idea to use a document like “5 Wishes” or another Living Will template to help you think about medical, emotional and spiritual questions. These resources can help you reflect on issues, and guide conversations with your Health Care Proxy and medical professionals who are helping you, so that they know what’s most important to you. These documents are a guide for your reflection and do not determine your care. (And remember: if you cannot make decisions on your own behalf, a Health Care Proxy or designee will be appointed by the State.)
The Health Care Proxy can be designated and living will/5 Wishes considered at any time of life, and they should be re-visited over time. A MOLST form, on the other hand, is important to have filled out when the health care choices described are likely to be made within the next 6-12 months of life.
Hopefully these brief descriptions help you know more about the different forms available, when and how you would use them. Remember that some of these seemingly practical choices and forms can bring up intense emotions; it might be helpful to have a loved one or trusted person in your life with you as you think about these things or fill out a form. At Hospicare, our staff works with families to complete the forms they need, and to make sure all wishes of a patient are expressed and respected.
Please email info@hospicare.org or call 607-272-0212 to talk with someone more about Advanced Directives. We are committed to helping our community work through these important topics, and speak to both individuals and groups. Keep in touch, and let us know how we can help!