I’ve been on both sides of the iPad as my personal and professional lives have collided
By Mahoganie Hines
September 5, 2023
In late 2020, the health of one of my favourite and most cherished people, my grandmother (who I called Granny), deteriorated. We could not see her as she was in long-term care and it was the peak of the first wave of the COVID-19 pandemic. I was permitted to see her only via an iPad. She did not comprehend who I was or that I was talking directly to her as she was in the latter stages of dementia. I think she thought she was watching me on television rather than talking to her, trying to tell her how much I loved and missed her.
As my grandmother’s condition continued to decline, policies changed almost as quickly as she did. Day by day, there was up-to-the-minute news of her deteriorating health. There were new visitation policies to follow. One day we could come in only if we were swabbed and tested negative; the next day only the identified “essential caregivers” could come in. Another day, when she had drastically declined, we all could visit but had to swab, test negative, and be up to date on our vaccines. We also had to ensure that only two visitors at a time saw her, and they needed to be on the list of visitors and wearing full personal protective equipment.
Was this the best we could do?
I work as a nurse, a specialist in palliative and end-of-life care. One of the most challenging endeavours for me during COVID-19 was experiencing the carousel of visiting policy changes in both my personal and my professional life. I continue to grapple with the death of two of my most cherished family members, my grandparents, during the pandemic. I continue to wrestle with the impact that visitation policies have had on my grief and the tensions that remain from my personal and professional life experiences colliding. I felt the tension then and continue to feel it now, years later, as I am just now able to begin to reflect on these experiences.
I have been the nurse holding the iPad for someone who is also unable to see a loved one, face to face, due to visitation policies that were created to keep both our patients and us, the health-care providers, safe. Like my grandmother, many of my patients were perplexed by the faces on the other side looking back at them, not grasping why or how their loved ones weren’t there. I would speak to their families and help move the conversations along, becoming an additional tool to be utilized in these experiences between patients and their loved ones.
Was this the best health care we could offer? In hindsight, I don’t think so. But I was not worthy of being invited to the larger conversations on whether or not pandemic interventions were appropriate. I’m sure many nurses in the profession share this sentiment.
My story of ‘moral distress’
That tension is what we in health care call “moral distress.” Moral distress is “when one feels unable to take what they believe to be an ethically appropriate or right course of action, including avoiding wrongdoing or harm, because of institutionalized obstacles” (Canadian Medical Association, 2020, p. 1).
The most difficult policy change we encountered was shortly after my grandmother died. She died alone. I believe this was how she chose to go, without having us fawning or fighting. She went on her terms, when she was ready, in true Granny style. I was the last of my family to see her earlier that day, and I gave her a “kiss” on her forehead through my mask and let her know she could go if she was ready and that she is loved. I promised to make sure Grandpa didn’t eat only chocolate because if he was left to his own devices, he definitely would.
I received the call that evening to say she had died. When I spoke to the nurse, I asked if my grandfather could see her and say his goodbyes to his partner of 65+ years. But because her care facility had gone into outbreak that day, the nurse said this wasn’t possible. I made three of the most difficult calls I have had to make in my life that night, letting each of her children and her life partner know she was gone. I can still hear my grandfather cry out. I felt the tension inside me grow. Although I understood why he couldn’t go, there was something pulling at me, challenging this situation. My instincts told me that it wasn’t right.
I know palliative and end-of-life care; I provide, teach and talk about it daily. I know how to support someone who is dying and their family, how to hold space and bear witness to their experience, how to care for a deceased body. Both personally and professionally, I know intimately what grief feels like. I knew that not letting my grandfather see Granny was incongruent with good end-of-life care, even though I understood why the decision had been made. If my grandfather was to go into the home, he could be exposed to something that could kill him. But I also knew to weigh risk versus benefit. He should have been able to hold Granny one last time if he chose to. She was his soulmate, and he was hers.
The next time we saw my grandmother, she was someone else entirely. She had been embalmed and was in her casket, her body cold, just a vessel of the woman who had raised generations of children and grandchildren. The hands that had wiped many a tear, baked the best desserts, and cradled generations had now become cold, without personality. I walked my grandfather up to the casket, holding his arm as he held his walker, this monument of a man. I heard him, the foundation of my strength, whimper and say with tears in his eyes, “I will be with you soon, Ma.”
I watched as a piece of my grandfather died and wafted away in front of my eyes in that moment. I am left wondering: if he had been permitted the opportunity to see and hold her in those last moments after she died, would this experience have been different?
His words proved to be true; he died early last year. The day prior to his death, I was permitted to visit him in hospice, one day after he arrived there from the hospital. My personal and professional worlds collided, and again I was the one holding the iPad, or rather my iPhone, to my grandfather’s ear as his son and daughter, my uncle and mother, spoke to him for the last time.
He also died without us present, almost in solidarity with Granny. The difference was that we were permitted to see him afterward. This, however, was a process as my mother had not been on the initial visitation list. It required several calls on my part and even some thinly veiled frustration, but we were permitted to see him. My mother and I had time to talk to him and share memories even though he was gone. It still felt somewhat as if he was in the room with us. We were given an honour guard for his body, a processional walking him out the front door, the way he entered the building, and were afforded all the time we needed to say our goodbyes.
When I saw him next — and he, too, had become a cold vessel of the man he was — I had the warm memory of seeing him with my mother, which softened the stony sentiment and “disconnect” I felt in seeing him embalmed in a casket. I tenderly reminisce about those last moments with my grandfather in his bed at the hospice. They offer me a sense of comfort that no words can effectively describe.
Nurses ‘bear the burden’ of policy
The way in which policies were enacted throughout the pandemic had a profound impact on nurses. Too often we were not asked for our input. Nor was the impact that these policies had, not only on our practice but on us as human beings, considered. Many of these experiences will not be fully realized until much later, when we are able to reflect on them. My experiences highlight one of the countless ways in which nursing knowledge and the lived experiences of health-care providers can be incorporated into creating more ethical and considerate policies.
Nurses are the backbone of our health-care system. Yet we are hemorrhaging them. A contributing factor is the negation of our voices. The pandemic has offered insight into the many ways we could enhance more robust engagement with nursing knowledge, such as integrating nurses more extensively into policy development processes at all stages. Consider our wisdom as principal stakeholders when making and enacting policies that, inevitably, we will have to implement. We are often the ones who bear the burdens of those policy pitfalls, in real time, and the impact lingers long after the policies are gone.
Nurses are more than simply care providers. We are family and community members. Our profession often crashes into the lives we have outside of the care settings in which we work. Consider our voices and do more than simply hear them. Listen. Let our experiences help foster healthy public policies rather than reduce us solely to being the ones who are left holding the iPad.
Canadian Medical Association. (2020). COVID-19 and moral distress. Retrieved from https://www.cma.ca/sites/default/files/pdf/Moral-Distress-E.pdf
Mahoganie Hines, MHSc, BScN, RN, CHPCN(c), is a palliative pain and symptom management consultant throughout Niagara. She is also president of the RNAO Palliative Care Nurses Interest Group and president-elect of the Canadian Palliative Care Nursing Association.