Depending on who I am talking with, coworkers at a hospital, fellow students from my spiritual groups, I get asked if it is difficult to work with patients who are transitioning out of this life. In my shaman group, we discuss our awareness of death. Death is respected and understood a little differently than the former group. Death is normal as birth is and should not be feared. Like the dusk and dawn that occur on a new day, there is an end, but a new beginning awaits.
In the hospital setting, doctors and nurses do everything possible to save lives. Death is viewed as a bad outcome. Understandable if you work in healthcare. Death is avoided by performing every possible procedure within reason. Please do not misunderstand, saving a life during emergencies such as car accidents or natural disasters, if the possibility of a good outcome is probable everything should be done to save a life. Without question, if it is in alignment with the patients’ needs and desires, everything possible should be done. But I am talking about chronically ill patients with multiple comorbidities whose health is deteriorating with no chance of improving. I want to talk about the person who is in a skilled nursing facility that cannot eat on their own, go to the bathroom alone, or even breathe for themselves. And let us not forget about the elderly in nursing homes with multiple bedsores developing due to immobility which will require frequent debridement operations until there is nothing left but bone. When patient brain function declines to the degree making decisions for oneself is impossible, it is left to others to make decisions for them. Leaving the decision making responsibility to family can become a burden in some cases, but more importantly, it takes away from one’s sovereignty. Treatments and procedures will be performed by healthcare professionals that might not be in the best interest for the patient to prolong life and can lead to the patient dying without dignity.
As a healthcare professional and a healer in training as I like to call myself, I walk a fine line between science and spiritualism. I want the best care for every patient I come in contact with. Not only the best physical care but mental and spiritual care as well. I want to be sure that every procedure or medication that is prescribed to the patient is in alignment with what the patient and family want. Nurses are the patients’ advocates first and foremost. However, sometimes it can be difficult to know for sure what the patient would want and not want if they are in a comatose state or cannot make their own medical decisions for whatever reason. In nursing school, the limited training I received on how to care for patients who are incapacitated is alarming. Do you know what I mean when I say this? What should a nurse do if they feel all the time spent working on a patient is for nothing? The patient will not get better, the patient is slowly worsening, and more importantly to me, the patient is in an unfamiliar cold hospital room until the day they finally pass, a slow inevitable death alone.
So what should be done to help avoid this situation? For starters, having a notarized will in place or an advance directive is a great way to avoid unwanted treatment for the patient to prolong life. A life that would not be much of a life at all. If you do not know what an advance directive is, I hope you do a quick internet search. It can be difficult and even a burden for a family member to make medical decisions for their loved one who is unable to speak for themselves. Imagine having to decide to keep a family member on life support or choose to stop medical intervention with the knowledge that it will cause the family member to die. Secondly, family and friends should feel comfortable discussing death. Often times we are forced to talk about death when its too late. Having to deal with losing a loved one is heartbreaking. Having to deal with making decisions regarding medical care should not be added to an already stressful situation.
I want my readers to understand I do not wish for people to die just because they are chronically sick or cannot take care of themselves. It is the complete opposite. I want people to live. I want people to have a long, meaningful, healthy life. To be kept alive artificially with mechanical ventilation, nutrition being given through a gastrostomy tube, with no chance at getting better is a tragedy to witness as a nurse.
I want to describe an experience I had with a patient. This experience left me wanting to do more for my community regarding the topic of death. Death is difficult to talk about but this experience was even more difficult to be a part of. With an advance directive in place, I would felt much better about taking care of my patient’s. I am the patients’ advocate and took an oath to do no harm and I want to make sure I live up to that promise.
A patient in their 30’s was admitted to the hospital for Covid symptoms a few months ago. Because they had other preexisting conditions plus the combination of drugs given, it exacerbated their condition causing a quick decline in health. By the time I saw the patient at my facility, they were unrecognizable from before. I know this because of pictures that were placed around the patients’ room when I went to pick them up for surgery. It was such a terrible thing to witness. The patient could only mouth certain words and unsteadily shake their head yes or no to questions asked. I wheeled the patient into surgery with a gut feeling the patient had concerns but was unable to articulate them. After the sedation wore off from the procedure that was done, the patient had a high heart rate and respirations were worryingly erratic. I asked if the patient felt pain and any other question I could think of that would help me figure out what could be going on. After a few minutes of trying to read the patients’ lips for an answer, I saw they mouthed “ I want to die”.
My heart sank.
I felt incredibly helpless. After a few moments, I looked again and saw them mouth it again. Only this time I wasn’t sure if it was the same phrase or if they were telling me IF they were going to die. The condition of the patient was likely only going to continue to decline and I could see their future consisting of more painful procedures. From what I could gather and understand after the limited interaction with a family member over the phone and the pictures in the patients’ room, there was love there for this person. A person who was not expecting to become gravely ill in such a short amount of time to the point they could not make their own medical decisions. I know the family wishes only what is best for the patient. But do they know what is best and what the patient would want? Social workers are the liaison between the medical staff and family and are in charge of ensuring the patient is receiving the appropriate care. Nonetheless, no one ultimately knows what the patient would want if nothing was preplanned for this type of situation. I discussed my interaction with the patient with a doctor and I was quickly shushed and told not to speak about it.
Nurses are faced with these situations every day. As a nurse and an apprentice natural healer, I feel helpless sometimes. Is it be ok to address the topic of death with family? Doctors sometimes don’t have the time or information to share. Is it ok to discuss information that is older than the bible? Would I be crossing the line? We have lost the meaning of life by forgetting about the meaning of death.
I know there are palliative and hospice services available, but sometimes it is too late or too much information for friends or family to handle. Sometimes it is not enough.
What can we do as a society to be more comfortable talking about death? How can we release the stigma if we talk about death we are inviting it to us. It can be the complete opposite. Once we accept death and are comfortable discussing it with our friends and family with the same appreciation and respect as we do with birth, we release the fear of the unknown and maybe even enjoy life a little better.
I challenge society to create a new paradigm. Let us create a new way of thinking about life and death. Let’s have an honest talk about death with our family. Our younger generations can have a better relationship with the idea of death as well as a better understanding of the meaning of life. Let us not leave all the decision-making up to the healthcare providers. Let us be prepared to make our own medical decisions when the time comes. Let us be accountable for our own life decisions. But mostly, let us die with dignity.