death doula

Journey Through Life & Death: HIPAA & Your Famous Last Words

This is the part where we mix the creative with the mundane. Let’s address the mundane first: HIPAA. You know it. You hate it. But what the heck is it anyways? Well, to put it in the most basic of fashions, HIPPA is there to protect your privacy. You don’t want just anyone having access to your deep, dark medical secrets, do you? Of course not. So, you need to tell your medical health care providers just who can have access to your medical records. Here is the official New York State release of information. If you live in a different state, of course you will be able to find something similar by doing a quick internet search. Here is a brief article reviewing the importance of filling out the form. Okay, now on to the fun stuff…

Think about the words that inspire you. Did you write them? Are they from your favorite song, poem, movie, book…? Write them down (or type them if that works better for you). Put them in your death binder. Your death binder is not supposed to be some dark place where all of your end-of-life forms go to die. The death binder is a place to celebrate your life. Celebrate all the things that make you…you. It’s your legacy. So start committing to capturing some of it for family and friends to enjoy when you’re gone. If some of those words are destined to become a part of your memorial service or funeral, make sure to indicate that in your living will. Remember the one I had you fill out from There is a place for such information there.

Okay, until next time… enjoy pondering and gathering the words that helped shape the person you are today. Put some thought into and enjoy the process.

Additionally, I filmed a video that with help anyone who is trying to figure out what to do with the debt incurred by a loved one. Plus, my call to action when it comes to rehabilitation/skilled nursing facilities. If you have a rehab story that you’d like to get out into the world, please contact me. I’d love to interview you for my channel. Perhaps someday, I can get it seen by the right people who are in the position to push for positive changes.

Here is a synopsis of me and my father’s skilled nursing nightmare:

  • He is transferred to Gateway Rehab and Healthcare in Lenoir, NC from the hospital with absolutely no notice. He was swept away and the family was not notified of when and where he went. He was just gone from his room one day.
  • At Gateway, he is quarantined for 14 days with no visitors and if you don’t have a working cell phone, you’re not able to contact anyone because there is no phone in the room. This was extremely isolating for my father.
  • For the first time in his life, he develops anxiety and cannot sleep. All he asks is for them to raise his head above the rest of his body but he is ignore and instead medicated.
  • Everyday he is left so lay in his own waste for hours. If he is placed on the toilet, he is left there for long periods of time.
  • His call button was not even plugged in for the entire 21 days and the staff was aware that it wasn’t plugged in.
  • He is not bathed. He asked to take a shower but was told that the showers are down the hall but that he is not allowed to leave the room because he might spread Covid, despite being tested for it everyday.
  • They tried to extend his stay by saying that the facility was going to be completely locked down to people going in or out because there was a Covid contact somewhere in the building. I called Medicare to ask what happens if the facility extends his stay past the covered 21 days and they told me that my father is responsible for paying a $183 co-pay for each extra day that he stays. They also reminded me that they cannot keep anyone. Skilled nursing is an option. I promptly call my father back to tell him that they are not keeping him any longer than is covered 21 days.
  • My phone calls and emails were completely ignored. The only time someone contacted me with any information was 3 days before he was set to leave. That was a nurse and a social worker telling me that my dad is in terrible shape and needs to stay with them. His reported condition is that he cannot use a walker and can only use a wheelchair because his body is so broken, he can’t toilet himself, he is on about ten medications and needs oxygen continuously. The social worker would tell me something about his condition (like that he had a urinary catheter) and then the nurse would backpedal and say that wasn’t totally true. I told them that he was leaving regardless of their recommendations. They said they were willing to only give him 10 days of medications and after that he was on his own. They were not prepared to give him a wheelchair so that it would take about a week to get one sent to his temporary home. For the entire conversation they were going out of their way to let me know what a huge mistake I was making in not just transferring him to their nursing home.
  • Ironically, after my phone call with the nurse and social worker, my father saw a physical therapist for the first time in his 21 day stay.
  • While he was at Gateway, he developed bedsores from not being moved. This is a person who just was hospitalized with a systemic blood infection.
  • When he left Gateway he continued to make very slow progress at my step sister’s for two weeks until we moved him to a private care home in NY. The first night that he was there, Judy (the owner of the home), showed him how to use a walker, had him putting away his things, using the toilet on his own and only using his oxygen when he was feeling winded. That was all within the first night of being there! All he needed was someone to show him how to walk with a walker and encouraged him to try. And all Gateway did was break him down and told him he would only get worse and he believed it.
  • It’s now been less than 4 months since leaving Gateway and he is walking without any assistance, quit smoking, no longer needs oxygen, the only meds he takes is an inhaler, is going to the bathroom and showering on his own and is happier than he’s been in a long time.
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.