Beautiful moments in Palliative Care
There are no simulations for the tragedies in life, we simply encounter them. In medicine, we practice and drill as to how we may respond to a patient with a life-threatening condition but when it comes to ourselves or to someone whom we love unless we’ve had direct experience, it is unclear as to how we may respond.
Literature may inform us, movies and TV-shows may draw our attention to the emotions that we may feel, in seeing how as the protagonist reacts and responds. But nothing comes close to the experience of receiving bad news or dealing with difficult and unexpected prognosis or facing an unclear future with a disease that is going to end your life sooner than you expected.
The way that she looked into his eyes, you tell that they were no ordinary couple. Isn’t it usual for us to see in a marriage that as infatuation passes and the realities of life start to increase in importance, the love story that once filled every moment and mood, can become a thin fraying border that holds you both together?
Well, that is of course the case unless you are intentional in love towards your spouse. It was clear to us that this couple both in their 50’s with teenage children, were so obviously in love. They were each other foundation, true partners in life, soul mates till even after death parts them.
He’d been given devastating news — he would not grow old with his wife or see his children’s children. But for the moment that this news toppled their dreams, a new vision was born. Of course, it was, why wouldn’t it be? As I got to know this couple and family I started to learn about how extraordinary they really were.
The one thing that I am learning is that if there is sufficient hope, overflowing meaning and absolute faith in your life beyond the physical, this can and will sustain you. It will help you get through difficult times and it will be your north star in times of great suffering.
As I talked to this couple I said, “look, I am really good at pain management and symptom control and all that other medical stuff, but what I want to know is how I can make this time more meaningful for the both of you and your family”.
To a dying person, this question hits the centre of all purpose and the essence of their lives. It translates to, “let me help you with whatever medicine I know, to help make your last days of earth memorable to you and for those that you will leave behind”.
This question is perhaps the most important in Palliative Care and dealing with any person with a life-limiting illness. In fact, I would say that it is one of a few performance standards that I hold myself accountable to, as I care for patients at the end of their life.
It is also important because it penetrates straight to the core of our existence, to our spirit.
With that, can I please explain why by using a model of thinking that I have found useful?
As people living in the land of the well, we tend to live in the here and now and who could blame us? We make plans and are excited about the future, but we also may have anxieties and fear about what may lie ahead and may sometimes carry guilt about the past. Our days are lived interacting with what we can see, hear, touch and smell. This is the level of gross consciousness, awareness of our physical world and where we are likely to live the majority of our lives. Put simply (for me), it’s living in the here and now, responding and reacting to the world.
Some of us may venture deeper into the realms of our minds and interrogate our psyche, or our soul consciousness. In this space of our mind, we probe our emotions and engage our minds to investigate logic and interact with ideas. This is also where we develop our inclination and our will in life — our direction. Put simply (for me), this is where we process our thoughts, our emotions and our experiences to determine our next steps.
The highest level of consciousness is our subtle consciousness. This where we connect to who we really are — our true self, our oneness and our being. In our subtle consciousness, we look to connect with the sacred and the significant. This where we look to find meaning in our lives, to find hope and to make sense of why? Put simply (for me) this is where we connect with the higher purposes of life. This too is where our “gut feelings” or intuition comes from and this is where our conscience resides.
(Reference: Levels of consciousness — Hidden faces of change, Greg Bellingham 2020)
As a Christian, the subtle consciousness is where I experience a connection with God — deep within my soul. This is where I hear God’s voice and experience his presence. It where I find peace amidst the storms of life.
Similarly, for Our First Nation people, it is within the subtle consciousness that they are divinely connected to their land, to the spirits of their ancestors both past and present, to the healing power of being on country and using the earth and its bounty as medicine. This why so many of our First Nation patients desire to return to country in their last days — to experience peace and oneness in their spirit before they physically leave this earth. This is a priority for my team.
I would contend that people who are facing the last months, weeks or days of their lives have a clearer path of access to their subtle consciousness. They are residing here and seeking answers to the big questions of life. They are searching for peace, they are hoping to transcend their diagnosis and seeking to be at one with themselves.
Does it come as any surprise then, when some are given a bad prognosis that what they truly want in life becomes clear?
This may look like a sudden course correction in their lives, for example — taking a trip to a place that they have long desired to visit, resigning from their job and finding another with more meaning, writing a book or creating a masterpiece that always been within them or seeking forgiveness and reconciling with an estranged loved one.
This is sacred ground and an important time.
Our patients are looking for a higher connection within their subtle consciousness. This is not necessarily religious, nor is it predictable but unique, individual and sometimes, beautifully simple.
As Dr Michael Wright explains in his article, both religious and non-religious people have similar needs at the end of life — they are looking for love, for meaning, for forgiveness and for transcendence (Wright 2001).
So, what matters to people at the end of their lives? What should we as health professionals, be aiming our treatment decisions at?
I would say that the purpose of our care for our patients at the end of their life is to help them find peace in these areas:
(Affection love, Friendship love, Romantic love, Transcendent love (Agape love of Christ)
(Does my life matter? Who do I matter to? How do I make this part of my life memorable and leave a legacy?)
(I need to make peace with this secret or with a person or with this experience I have been carrying with me. I need forgiveness)
(There is more to my life than a diagnosis and this is how I am going to get through and experience joy)
Without hesitation or a pause in the conversation, he looked at me, his eyes warm and clear and spoke straight to my heart. He replied, “I want to be together with this girl till the day I die, Oh! I mean woman,” he said, correcting himself, pulling her close and laughing as they both kissed each other on the lips.
A beautiful moment.
I usually know I am standing in the sacred space of a beautiful moment because I usually tear up too! These are the moments in my patient’s lives that I have the privilege of experiencing, that I am invited into and which I treat with great respect. The visceral feeling within me; my tears, the tingle down my spine are the indicators that I am connecting with a patient’s subtle consciousness — who they really are and what is sacred, cherished and significant to them.
These are the beautiful moments in Palliative Care.
Beautiful moments in my work, are beautiful moments in their world that go on to be beautiful moments that they will remember and cherish forever.
This is the one thing that sustains me as a Palliative Care doctor and the one thing that I will always try to create for my patients. It is absolutely the point of what I do and where I try always to direct each treatment decision.
It is connecting to what provides them with hope, what gives their lives meaning and what helps them get through their illness to their last day.
What brings you hope? What is meaningful to you? What helps you get through tough times?
Enjoy your health.
Dr. Jonathan Ramachenderan