Moral dilemmas in hospice
I never imagined the nightmare that hospice nursing has become since COVID-19. Our philosophy of care is to support the entire family unit, and hospice nursing before the pandemic looked much different than it does now. Only 6 months ago, families were able to sleep at the bedside of their loved one in my inpatient hospice unit - where the most symptomatically sick are cared for by an interdisciplinary team consisting of a nurse, physician, hospice aide, social worker, chaplain, and volunteers - and there was no such thing as visiting hours. All hours were for visiting. We conducted weddings in the garden, arranged for a patient's horse to visit her one last time, were visited by music therapy volunteers whose cello and guitar melodies spilled into the halls.
My days on the COVID hospice floor are much different. In layers of reusable PPE, I carefully observe the clock while in my patients' rooms as I try and balance good nursing care with personal safety. Did that bed bath take too long? How can I leave this crying patient all alone?
Families, desperate to see their dying loved ones, beg us to make exceptions to our 2-person visitation policy. "But there's 3 of us kids - how can we choose between us?" Staring longingly at their dying mothers, fathers, sisters, and brothers from outside the hospice room's door, in the rain, they wish in vain to talk to, to touch their family member one last time. I do my best to offer facetime and zoom calls to the families, but it's not a replacement for a real embrace.
What hell is this in which we now find ourselves? My holocaust survivor of a patient who lost everyone he loved in the death camps now must die alone. I am unable to get a priest to offer anointing and sacrament of the sick - instead it's completed over facetime. The wife of a patient who sobbed to me that she hasn't seen her husband in 6 weeks while he was hospitalized with COVID-19 - and that's the longest they've been apart in 65 years of marriage. And now he's unresponsive. I hold myself together as I offer support, but later I fall apart: my head in my hands, sobbing. "I can't do this, how are we supposed to do this?"
It feels good to cry, to loosen the grip of all this grief. But it also feels like trauma - for us, but mostly for the patients and families, and I'm sad for everyone who won't be able to say their goodbyes at the bedside, who won't be able to participate in death traditions and rituals that help move us through the cycle of grief.
Most people don't understand what we see and do at work every day and it's difficult to translate in a meaningful way. I know you all "get it". I yearn for a better tomorrow, but I'm plagued with doubts about a viable vaccine, or ever working without an N95 mask again.
I am coping by riding horses every day I'm not at work. The barn is my happy place where I can be alone and recharge. I am working on art projects, reading more, and finding appreciation in the small things. It's been a really, really hard time to be a nurse; harder than I ever imagined, but I know this is where I'm meant to be, in the right now of the pandemic, even if I have moments when I feel like I just want to give it all up.
Kris, sending you all the support your way. Thank you for what you do. Be sure to care for yourself in this (sounds like the horse riding helps!). My mom just entered hospice, and we (five adult children) are waiting to see what visitation will look like. I am heartbroken, but know we are only one family. Thank you for all you do - I am comforted knowing my mom will have a nurse just like you!
Kris, this is so resonates with me. You have expressed it all so eloquently and I too understand the trauma of these families and feel I have some scenes burned into my memory. Thank you for writing.
Thank you for your work. My family has dealt with this and it's not easy, but caring nurses were the bridge that got us through.
Now that we are months into this pandemic, what ideas do you have for changes that could/should be made to ease the hospice experience for everyone -- patients, families and caregivers?
Thank you for your comment. That's a really tough question. We don't have enough PPE for multiple family members to visit. We don't have the staff necessary to aid multiple family members in and out of their PPE. And as much as the family members are educated by staff about infection control, they are not clinical people, and inevitably they touch their faces and cell phones snd the patient, and pose a greater risk to the community (and to the staff).
What could and should be done (more staffing, more PPE) are things outside my control.
One idea would be to allow a visitor while the patient is hospitalized. Most of my patients that are admitted from ICU haven't been allowed a single family member to visit during their hospital stay (some were there several weeks). That needs to change.