By Marty Machia, RN
Editor’s note: Marty prepared these comments to honor those who died at the McClure Miller Respite House in 2019.
I want to begin with a short quote by Ram Dass, a spiritual teacher who sat at the bedside of many during their dying process:
“Working with people who are close to death straightens you up very quickly. Especially if you have a taste for the truth. If you have a taste for the spirit. You know — truth and spirit are intimately linked.”
Many people ask those of us who work in hospice, “How do you do this work?” “It takes a special kind of person.” People often say to us, “How DO we do it, exactly?” Though being with death and dying CAN be hard — of course — it is also a deep privilege. What could be more meaningful, more intimate, more raw or real, aside from birth, than to be with those who are at end of life?
We are given permission to not only glimpse into this intimate world, but often be in the center of it. To be a part of someone’s life story. And to witness this process, an opportunity not given to many. As Ram Dass paints so beautifully and accurately, death brings you up close and personal to the truth. These truths teach us not only about dying, but also about living. There is no way to separate the two.
Here are three truths that I have been fortunate to witness, being alongside patients and families at the end of life.
Number 1: It is important to meet someone where they are at, not where we are at. This is their journey and not ours. And this also applies to family and friends who are grieving. Grief looks and feels different for everyone. There isn’t a right or wrong way to die, or to navigate loss. Ram Dass also said:
“In working with those who are dying, I offer another human being a spacious environment with my mind in which they can die as they need to die. I have no right to define how another person should die. I’m just there to help them transition, however they need to do it.”
Yes, as hospice workers, we do have a certain amount of clinical and non-clinical experience and expertise to suggest what may help with comfort and minimize symptoms. But, ultimately, we don’t know what is best for someone. Only they can decide that. Everyone has a different lens of reality. Everyone has a different view of what suffering means. What we may label as suffering may not feel like suffering to the patient. And — is suffering necessarily a bad thing?
Years ago I was working with a young patient with cancer who did not want to take lorazepam for his anxiety. Though he was usually stoic, one particular morning he was very tearful and having a hard time. I quickly talked to the medical director. I was adamant in what I thought was right, determined to get an order for lorazepam to help him feel more calm and reduce his suffering. To my surprise, the doctor then said, “Good. This is the first time he is feeling something.” This snapped me into reality. This patient needed to process his feelings and grieve, because he hadn’t yet. Though it was uncomfortable for me to see him upset, it was crucial to his process. I needed to allow space for that.
Which brings me to the next truth.
Number 2: In both living and dying, we must be able to hold space for the full spectrum of the human experience. This includes what we identify as “good and bad,” “positive and negative,” “comfort and suffering.” The truth is that in living, and consequently through the loss of life — there is comfort and peace, and there is also pain and suffering. That’s just the way it is. While I want to minimize suffering for patients and families, is it always what is best? And is it my decision to make? Humans need to be allowed the space to grieve and feel the entire experience. To complete their process.
To have room to work through feelings and realities, rather than mask them or deny them. Moving through the hard stuff is necessary for actual integration and ultimately — acceptance and peace.
The reality is the beautiful and the heartbreaking often cannot be separated — they are one in the same. This requires being open and brave enough to hold space for all of it, which is quite tender. When I see patients and families crying, I not only feel their pain, but also the immense depth and layers of their love.
The third and final truth I want to share is all about love.
Number 3: Perhaps the most potent wisdom that patients and families have taught me is this — what matters most in both living and dying is love and connection. Nothing else really matters. When someone is in their last days and weeks, what becomes most important is relationships. This not only includes who is sitting with them at the bedside, but also who is calling them on the phone, and who is coming out of the woodwork after being estranged for years. All of the relationships are important. They always were. The supportive ones. The turbulent ones. The relationships that need forgiveness and repair. Beyond relationships, the other layers of life (career, work, hobbies, travel) all fall away, either forcefully by illness or willingly without hesitation. What people want and need in their final days is to be with those they love.
I want to close with a poem by Rupi Kaur:
most importantly love
like it’s the only thing you know how
at the end of the day all this
where you’re sitting
nothing even matters
except love and human connection
who you loved
and how deeply you loved them
how you touched the people around you
and how much you gave them
May we remember this always.
Marty Machia, RN, is a hospice nurse working at Colchester’s McClure Miller Respite House, Vermont’s only Medicare-certified inpatient hospice. She prepared these comments to honor those who died at the Respite House in 2019.