death doula

Journey Through Life & Death: MOLST

I’ve been trying to figure out when is a good time to mention my recent family emergency and this part in the process seems the most apropos. A little more than a month ago, my father ended up in the ICU for respiratory issues and his condition deteriorated to the point that he was in a medically induced coma, put on a ventilator and tube fed. The doctors told us that after two weeks on a ventilator, we would have to make a decision: to take him off the ventilator and hope that he can breathe on his own, if he can’t than Hospice can make him comfortable until he passes OR do a tracheostomy which would mean in his case that he would be on a ventilator for the rest of his life. Two weeks is their ventilator maximum because the tube then begins to erode the lining of the trachea causing permanent damage.

Now, being a death doula, I knew to ask about if he had appointed a health care proxy or made any indication of his wishes before he had crashed, but he unfortunately hadn’t. Since there was no health care proxy, these decisions fell to his next of kin which was my brother and I. We discussed what we thought dad would want and we easily decided that there was no way he would want to live on a ventilator. So this brought us to how we went about conveying that to the medical staff at the hospital. This is when the MOLST (Medical Orders for Life Sustaining Treatment) form saved my dad. I had made a copy of the MOLST even before I got to the hospital so I knew what questions we would be asked to consider: Does dad want cardio pulmonary resuscitation?, Does he want to be on a ventilator?, Does he want to be intubated?, Does he want a feeding tube? and For how long does he want these interventions?, etc… Since they had already intubated him, put him on a ventilator and inserted a feeding tube, those actions were already in play by the time my brother and I stepped in. What loomed over us was the tracheostomy because at the time we weren’t sure if we were condemning dad to death without one. We went with our gut and wrote on the MOLST that he was not to have a tracheostomy. The next day, I handed it to the doctor and we briefly reviewed the form together. Over the next few days, medical personnel knew that the tracheostomy was no longer on the table so their focus became weaning him off the oxygen. I’m happy to report that two days before the tracheostomy would have to be done, he successfully was taken off the ventilator and is now feisty as ever. Once he could speak, the first thing he did was thank me for my decision. I’m grateful that MOLST and health care proxy forms exist. If they didn’t, he probably would remain on a ventilator until he faded away and our family would not get to enjoy anymore time with him.

The MOLST (or POLST) form is something that is usually given to you by your doctor when you have a life-limiting illness, are placed into a long-term care facility or something that you may ask for if you are certain that you do or do not want particular life-sustaining measures (or even if you want them but only for a limited time, you can convey that on the form). When used in a hospital setting, it’s on a special colored sheet of paper so they know that it’s the official document. For non-hospital settings it’s used to convey to emergency personnel what your wishes are (for example, if you want CPR or not). In order for the form to be honored by EMS, home care agencies and hospices, the form must be signed by a doctor. What I can’t recommend enough though is filling out a copy before something extreme happens, even if you don’t have a life limiting illness and don’t want to get a doctor’s signature. If you’ve filled out your living will than you will find the questions repetitive but in this case redundancy can’t hurt. Having it there for guidance would be helpful. Put it in your magnetic fridge folder and also give a copy to your health care proxy. If we had at least a copy of a filled out MOLST from my dad, than figuring out what to do would have been a no-brainer for me and my brother.

Things to know:

  • If someone doesn’t have a designated health care proxy then the decision-making falls to the surrogate or next of kin which is the spouse (if not legally separated from the patient) or domestic partner, a son or daughter 18 years of age or older, a parent, a brother or sister 18 years of age or older or a close friend, in that order.
  • If you’re wondering about the DNR (Do Not Resuscitate) order, only a doctor can sign that form and it only covers CPR, not the rest of the interventions on the MOLST.
  • Make sure that when you or your loved ones transfers from one place to the next, that the MOLST/DNR is updated and still applies. For example, if a loved one is in the hospital and has a filled out MOLST/DNR but then they are sent home, that hospital document may not apply. A non-hospital version may have to be filled out.

Each state has their own version so I’d advise you to just Google “MOLST” or “POLST” and your state name. Here is New York’s version.

death doula

Journey Through Life & Death: Advance Directives

An advance directive is a written statement of a person’s wishes regarding medical treatment, often including a living will, made to ensure those wishes are carried out should the person be unable to communicate them to a doctor.”

— The Oxford Dictionary

I think what intimidates people the most about end of life planning (besides the whole death aspect) is all of the confusing paperwork and language. As your doula through this death journey, it’s my job to make this easier for you. There are many types of advance directives: the health care proxy/durable power of attorney for health care, the living will, Physician Orders for Life-Sustaining Treatment (POLST), do not resuscitate (DNR) orders and organ and tissue donation forms are all included in this umbrella term. In this post we will cover the health care proxy and the living will. The American Bar Association goes over the difference between these two in the perfect amount of detail.

Basically, the living will component of the Advance Directive covers how you want to be treated in certain medical situations. The health care proxy form (or otherwise known as durable power of attorney for health care) allows you to designate a person to make medical decisions for you in the event you are unable to express your preferences about medical treatment. This could be because you are unconscious or because your mental state is such that you do not have the legal capacity to make your own decisions. Now, I’m sure you’re wondering who you should bless with this rather hefty responsibility and how you might want to strike up a conversation with them about your medical wishes. The Conversation Project has created an amazingly helpful document HERE that covers all of the considerations and legalities involved with your choice. Yes, this is a legal document. No, in most states, you do not have to get it notarized. Please read through this document before you continue on to filling out your own form.

Get your Advance Directive by state here. Once you’re done filling out your form, give a copy to your health care proxy and any other family/friends you deem necessary, give a copy to your health care providers at your next visit, give a copy to your local hospital at your next visit, keep a copy in your 3-ring binder (inside a sheet protector) and also keep a copy in your magnetic file holder that I want you to put on your refrigerator. Why the big fridge magnet, you ask? Well, if an emergency were to occur, all of your essential documents will easily be found by EMS and loved ones. This is especially important for those nearing the end of life who have specific Do Not Resuscitate wishes.

The Advance Directive is not set in stone. You can update it whenever you feel the need. Just shred the old copies and replace them with updated versions. If you’re healthy, I recommend reviewing your end of life care plans annually. However, you may want to do it more frequently if any big life changes occur or if your health status changes.

Do you need help starting a conversation with the person you’d like to be your proxy? Well, I’ve got you covered, here is a step-by-step guide.

Okay, next time we meet up we will cover a more robust version of the living will.