My thoughts today are centered on end-of-life care. It is already very obvious to me that much of how we approach the end of life mirrors how we approach daily life as an individual and a society. I hope you have a few minutes; this is a long one.
To begin with, I would like to do a short comparison of how the presentation of the critically ill patient I discussed last post contrasts with how he would likely appear in America. I apologize if it feels redundant. I was amazed (and secretly loved) the fact that the man I visited was not sedated or paralyzed simply because he was intubated.
In America, he would likely have been given medications and been described as being put in a “medically induced coma”. Although many would probably argue (and often credibly) that there are physical and psychological benefits to being placed in a coma, there is certainly a convenience factor as well. People do not thrash around, remove tubes, or endanger their self while sedated, but they are also unable to protect themselves (see nurse job description). I have a sneaking suspicion that family is charged with helping to ensure that patients do not pull out IVs or tubes here in Thailand.
If these are in fact his last days, do you suppose he would prefer to be unconscious and paralyzed, or struggling to communicate with his family? As a family member, would you prefer to see him lying there lifeless hoping that he is getting better and not knowing how his mind is doing, or witnessing his deterioration until comfort measures or palliative care are initiated? And, do we subvert a person’s will to live, or die, by rendering them unconscious for extended periods of time?
As an inexperienced nurse, there are many aspects of care I had not yet developed the tools or skills for. In an Emergency Department (ED) in America, some nurses view the psychosocial aspects of patient care as optional - a perk to be completed “if we have time” or utterly unimportant. However, the psychosocial aspect is where I feel that we really can make a difference for patients and family units.
Personally, a particularly frustrating area where we often neglect the psychosocial was the actions we take as we intubate a conscious person. When we intubate a conscious person in the ED, it is because we fear they may stop breathing at any moment. Although considered elective, everything happens in a whirl of excitement. On many occasions, the patient did not respond to treatment or slowly deteriorated in our ED over an extended period of time. Some doctors and nurses are proactive about discussing intubation, risks, and other specifics of their situation; I am not yet among them. I often wish we stopped for just a second and provided a prompt for the person to consider if they would like to say a prayer, send a text, or anything else before they were put under. I think we do not do that because it could create anxiety or acknowledge the possibility of death.
In America we cannot talk about death in the hospital unless someone is clearly old and dying, or already dead. There have been several times that we intubated people who were awake and conscious, and those were their precious last moments of consciousness on this earth. That haunts me a little, but I take solace in knowing that I will learn how to have those conversations as I improve my practice.
On a Saturday afternoon, shortly after we arrived, Susan and I came home from a day in NongKhai and were stopped by the staff of the care center before we were even able to unlock our front door. The only words I could make out from the nurse assistant were the patient’s name and dead. Susan quickly took my bike and I hurriedly headed to the care center, unclear about what was expected of me. There was also no fluent English-speaking staff working.
A short back-story - The patient had been sent to us from the hospital for continued recovery the week prior. He had advanced AIDs, pulmonary tuberculosis, and could not have weighed more than 75 pounds. He had been removing his feeding tube and IVs at the hospital, at which point there was little more they could do for him. While with us for a short time, he was isolated to his room (active tuberculosis), and had been refusing to eat or take his medicine. It was clear that he was beginning to decompensate on Friday when he became cyanotic (winded and a blue-ish skin tone) during his hygiene care, and required oxygen.
I quickly threw on a smock, mask, gloves, and grabbed the stethoscope. I entered the room and listened for heart sounds or a pulse, but there were none. In the back of my mind I was concerned that they were expecting some type of resuscitation effort, which would clearly have been futile. In the end, it became clear that the staff member was fully aware that he was dead and she was looking for assistance preparing the body.
We gently washed and dressed him, attempted to close his eyes and position him. Other patients went out and cut flowers and placed them in his hands. Once Sister Pranee arrived from the convent, we had a short prayer ceremony in Thai. After the prayer portion was completed, each staff member and every patient (with the ability to walk) lined up, approached the body, dipped a small palm branch in Holy water and gently shook it while passing it from head to toe and back. The palm and bowl of Holy water was then given to the next person. Once done, the doors were left open and we all shared our presence for around half an hour.
With my father being a funeral director, many of you know that I was well accustomed to death prior to becoming a nurse. I enjoy that fact that I have seen the rituals performed by many different religions surrounding death. A little information we have learned about the Thai funeral customs in this area: we have been told that each town or community usually has its own refrigerated casket for use on the occurrence of the death. The body is kept at the residence for 3 days, and someone is awake at all times to keep the spirit company. There is loud music played and other ceremonial customs, perhaps a small parade and a lot of celebration as well. At the end of the 3 days, the body is taken in a casket to the temple and cremated. There have been occasions where a patient has died, and the other patients have taken turns staying awake with the deceased overnight.
Although this patient was not doing well, I really was not expecting him to die. As a result, I had some unexpected feelings rise up in the immediate aftermath.
As I walked home from the care center after his death, my initial reaction was frustration and failure. I knew that this patient was heading toward death, but I did not have the language to explain that death would come unless he started eating and taking his medicine. I was also initially frustrated with the nurse I work with because he knew that his situation was grave as well. On Friday, he even discussed the possibility of placing a feeding tube and IV hydration, but he thought we would have to wait until Monday because then the patient would not have the power to resist.
After processing the situation on my own, a little bit with my wonderful wife, and through discussions with the nurse, I quickly came to be at peace with the situation. In the end, he was fully conscious and alert, even when the nurse assistant checked on him 2 hours before he was found dead (incidentally, it did bother her to have been the last one to speak with him). She asked if he wanted to go to the hospital, and he was not ready yet. The truth of the matter is that even with a trip to the hospital earlier (or if he had never left), his condition may not have been survivable. Even in Thailand, his death was guaranteed to be more uncomfortable than the quiet, peaceful death he was allowed to have in the care center.
A photo from the village next door that I took on our bike excursion.
A small example of the overwhelming concern the Sisters of the Good Shepherd have here in Thailand now can be witnessed with the patient’s wife. She had ridden a bike a long distance to come visit him on a few occasions, and we welcomed her and had lunch with her just 2 days prior to his death. 4 days after his passing, she arrived by Tuk Tuk, with a bag and not enough money to pay for her travel. An employee gave the driver payment without batting an eye.
Part of the story that has been shared is that the widow is a person who suffers from HIV, poverty, was physically abused by a previous husband to the point that she limps and has limited use of the left-side of her body, and was evicted from where she was living after her husband died. She has also admitted to alcoholism and is clearly in mourning for the loss of her husband.
I was at a meeting where they were discussing her case on day two, because she would leave the Friendship Garden and walk a short distance to the village where she would beg for alcohol, and return intoxicated. The discussion included the following concerns:
- Her harming herself or others
- Prostituting herself for money and spreading HIV
- The fact that she was rejected for Alcoholics Anonymous classes due to her HIV
- The unique challenges that this could bring to the overall community
She has now been here 2 weeks, has not left for a drink in 5 days, has been making friends with a couple of the patients, and this week I saw her authentic smile for the first time.
I suppose this is just one example of how they truly live a quote often shared that originated with their founder, Saint Mary Euphrasia – “One person is of more value than the entire world.”
New Feature!!! I’m going to start sharing a high and low from the week.
Low - Frustration – My limited time with the internet can be complicated by a lack of reliable operation at a speed above dail-up. As I was attempting to post this Monday morning, I spent 30 minutes making online edits and then the page suddenly reloaded and I lost everything (I learned in the 4th Grade to save early and often…) Needless to say this was not how I wanted to start my Monday. And again today this post almost did not make it up due to technical difficulties...
High - Adventure – Last Wednesday we had unusually beautiful weather. It was a very mild day, despite there being no rain and mostly sunny. After we got home from work Susan suggested a bike ride and off we went without hesitation. We don’t ride fast, but I grabbed my camera and we traveled in a new direction. We went through a mall village we have never seen before, and ended up on a pristine blacktop road through the country and small villages that made me want to go forever. We didn’t though and returned in about an hour to make our usual dinner.