The number of Covid related deaths here in the USA as we come to the end of the year is staggering! I believe it is going to take us years to get our heads around the numbers and come to terms with the enormous losses of loved ones. The healthcare workers who have been with those dying are permanently altered by the experiences. Some good, and some not so good.

As a hospice RN, I chose to do this work and be with the dying because I believe it is fundamentally a part of our natural life cycle. For me, the work of being with patient and caregivers to help them to a peaceful and comfortable (as much as possible) end is an honor. But it is certainly not easy work. Watching a person die gasping for breath, or suffocating from secretions is intense and hard to see and most deaths involve some form of those symptoms at some point in the dying process. Hospice RN’s work hard to minimize the awareness of those symptoms for the patient with medications mostly, but we cannot avoid them, as those symptoms of gasping for air is how the body shuts down. That is how we die. Our colleagues in the ICU’s this year have joined in our work of bearing witness to the dying. They have had to witness far too many deaths of patients not only aware of what was going on, but also alone. To witness death under those circumstances is psychologically draining and damaging. My empathy for all of those staff members of countless hospitals and EMS workers who had to stand by and try to comfort in those final hours or minutes is immense. I worry that they have had to endure something they were never trained for, or even believed in and the repercussions due to that will last for decades. .

BJ Miller wrote an opinion piece December 18th in the New York Times, What is Death and brings up the subject of how death this year has taken on a whole new meaning to all of us and has made many of us face what death means, yet again. An uncomfortable concept at the best of times; a frightening concept when it is imminent. Nonetheless, a crucial concept for us all to wrestle with and understand. Death will happen to each and every one of us. The one true connection we all share. Our end of life will be for most of us, in the hands of caregivers, often trained. For me, I want those caregivers, be they EMS, MD’s, RN’s or CNA’s to have had some education on how to help the dying person and to understand when I change from someone to cure to someone who is dying because the care changes. Many Covid patients did not have that understanding from their caregiver.

This year, the horror stories of people dying alone without a loved one at their side and with tubes and ventilators is creating a mythic new terror for many and will no doubt lead to people wanting to deny death even more, which is not healthy or helpful. Healthcare workers who were the stand-in loved one will take years to process the witnessed trauma of people dying alone and afraid. My hope is that the healthcare workers will get the loving support they need so they can process their grief and trauma and add to the conversation and education for end of life care. Medical colleges give such little time to end of life specialties historically and perhaps after this year of such loss, medical programs will finally add to curriculums with more emphasis on the importance of end of life care for all disciplines. Tragedy, sadly, is often an excellent teacher.

T

I started this blog back in 2017 while I was still working at a residential hospice, providing 24/7 skilled nursing for hospice patients and support to families. I managed to write just two posts back then and thought this blog would be a venue for my thoughts and rants on EOL. Well, life came along and distracted me completely! So here I am again wondering where this will lead. Living in the time of COVID has changed the dialog, and has made me aware of the continuing gaps in understanding the very human elements of end of life.

I am thinking it would be good to open this up to other hospice workers as a venue for writing, sharing ideas and also books worth reading. I want to develop this as a go-to forum for all things hospice. I realize that much of EOL occurs outside of hospice and I hope others will join in but let’s just start with hospice for the time being. In other countries, Palliative Care is a more prevalent term, but since I am within the USA and specifically the Midwest, hospice is still the predominant field for EOL care.

Today, I am working as a RN case manager for home care and hospice for a small rural hospital in Minnesota. I am finally working in my community and although the work load is endless, I really feel fulfilled with being able to manage the care of people in my community. Case management has been an interesting learning experience, especially for EOL care. In hospice in the home, so much of my work now is educating family and caregivers on how to prepare and manage EOL care. The patient is of course involved in some of the education, but often, they have their own wisdom and are the one setting the pace. The patient directs the timing completely as to when to introduce certain levels of care; not because they say so, but the skillful hospice RN reads the symptoms presenting and readjusts the plan of care.

Please join me as I contemplate and write around this topic. I look forward to reading your thoughts on EOL care.

Many patients tell me that they are “ready to go” and then struggle when they realize that making that momentous decision is not the deal-breaker for dying. Don’t get me wrong, it is important, but they often have not taken into consideration the importance of the mind-body connection in the act of dying.

This is particularly true for the most spiritual patients whom have spent a life developing their spirituality within their religion or those who have spent their life working with their high-functioning mind in fields such as science or mathematics. Our minds are amazing tools we use each and every day,  but sometimes at the end of a life, it is very difficult to turn that tool off and let it go. Particularly when we believe it has maintained order in a chaotic world and for many, the end of life is the most chaotic time they can imagine and so they clutch to their mind at that time. Using it to take control of their weakening body.

Now you would think that people that were very athletic in life would fare well in this physical feat of dying, but alas, they too have used their mind to help get the most out of their body, often pushing it to the limits. They too struggle in their final days as the very thing that gave them vitality in life keeps them going on, defying every physical challenge that comes along. Family will often state proudly, “…oh they are such a fighter!”, not realizing how fighting death is a negative.

The Buddhists have wisely understood the mind’s powerful lock on our ability to let go and created one of the most effective practices in preparation for the time of death; that being meditation.  Meditation is a life-long discipline we practice over and over again, with our own death very much as motivation.  The Tibetan Book of the Dead  is all about this very idea but it is not an easy text for a westerner to understand and in the Buddhist tradition it is thought to take a lifetime of practice to master its instructions.

Prayer is certainly a form of mediation for many but not always the dependable discipline that meditation seems to be. Regardless of of your religious or philosophical practice, the underlying fact for us is that when we die, we must be at peace with our body and switch off our mind.

Acknowledging that our body is going to die is something we must all do at some point. Often our body can no longer go on due to a disease process and despite our best efforts to halt the disease, the body will die. That means the mind too.  Yet the mind, with fear fueling it along, can keep a body going much longer than it need do and it can seem like unnecessary suffering as the dying person hangs on and on and on. The family becomes fatigued and overwhelmed by the question of “…why hasn’t our loved one died when they said they were so ready?”

I have always felt that death is the reverse of being born and equally demands the physical exertions of labor with its different stages, transitions, peaks and troughs. The hospice RN is the mid-wife, guiding the dying person to their final breath. I often try to check in with my patient to find out how their mind-body connection is. If they are struggling, I will speak gently with the dying patient of giving thanks to their body for all it has done in this lifetime and to take this time to say goodbye to it with peace. Sometimes just talking of what is likely to happen as the person is dying can help give them a guide for what is to come and allow them to get rid of their fear of the unknown. Finding out what form their fear is can help guide what is needed.

Often we use medications to help the person with the pains of their labor. Pain can be caused by many physical forms due to disease process and shortness of breath as respiratory and circulation function slows down. Other forms of pain can be due to the mind-interference of fear generated by hallucinations and other mental disturbances caused by chemical imbalances as the body attempts to  shut down. Dying is a very physical act and everyone will do it in their own unique way, just as every birth is unique.

How is your mind-body connection? How will you prepare your mind to let go when the time comes?

Of course the other aspects of dying such as spiritual, emotional  and mystical (none of us knows what is happening) will always be with a person as they die but first and foremost, death is physical and it is a good start as we prepare for our final days.

Jan R