The COVID-19 pandemic is changing the dying experience

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As the focus on the COVID-19 pandemic slowly shifts away from the numbers and graphs that dictate our efforts in ‘flattening the curve,’ stories about how people are living through the pandemic are beginning to surface. And counterpoint to these illustrations of life are the stories of those who must cope with death during this unparalleled crisis.

“Families are heart broken and afraid,” says Samantha Peck, executive director of Family Councils Ontario, which represents family members of residents who live in Ontario nursing homes. “They don’t want their loved one to die alone.”

Since the epicenter of the pandemic has shifted to nursing homes, families (usually only a single person) are now only allowed to visit when a resident is imminently dying. This ultimately means that many family members may not be physically present during a loved ones final moments. Peck worries that many families will have “unresolved grief and trauma” from not being able to fully participate in the dying process the way they normally expect to.

With such restrictive visitation policies – which are essentially identical in most hospital settings – one might wonder if more patients are choosing to die at home instead.

Although no formal statistics are available as of yet, Ciara Whelan, a palliative care physician from the Temmy Latner Centre for Palliative Care who does home visits, notes that her own practice may have gotten slightly busier since the pandemic started. However, her patient volumes have not been overwhelming and concerns of potential drug shortages for symptom management at home have luckily been avoided as well.

And because the idea of frequent home visits also raises concerns from an infection control standpoint, Whelan has been adjusting to doing more virtual visits, often at the request of patients themselves. “I almost feel guilty about not doing as many actual visits and ask myself whether I’m doing enough,” says Whelan. However, she notes that if neecessary, a physical visit – whether by a physician or allied health professional – will still be done.

What happens after death is also a vital part of how families mourn and honour their loved ones, and this has also changed significantly with the pandemic. In the hospital setting, families are normally given time to deliberate on funeral home preferences and physically see their loved one prior to transport. Now, families must select their funeral homes within an hour of death in order to prevent any potential stockpiling of bodies in the hospital.

Dick Huyer, the chief coroner for Ontario, understands the pressure this puts on both families and the healthcare providers tasked with engaging in these difficult discussions with them. “It’s tough and it’s a big change,” says Huyer, “but it’s doable in a compassionate and caring way.”

This is particularly difficult for cultures that have very specific practices around the preparation of a body after death, which have become difficult to honour. Lisa Grushcow, senior Rabbi at the Temple Emanu-El-Beth Sholom, acknowledges that current restrictions have been challenging for members of the Jewish faith. “There’s a sense of a double grief,” says Grushcow. “There’s the grief of the loss, and then the there’s the grief of not being able to mourn as they always assumed they would be able to mourn.”

Grushcow adds that the usual practice of Shiva – a week-long mourning period in Judaism where relatives gather together in support of the deceased – can only be done through online gatherings using applications like Zoom or Skype.

This speaks to the changing landscape of the funeral service sector as a whole, which has had to adapt to social distancing rules through technology in order to bring people together. “Funerals are steeped in tradition and having people shift over from a funeral in person to something that is completely online is a very big shift for people to adjust to,” says David Brazeau, communications manager of the Bereavement Authority of Ontario.

Each province in the country sets its own rules. In Ontario, for example, no more than 10 people (excluding staff members) are allowed in a funeral home at any given time. Brazeau notes that the smaller size of funeral services also puts a financial strain on individual homes.

And although all funeral homes have always had a preexisting supply of personal protective equipment (PPE) given its adherence to infection control measures, procurement of supplies has been an ongoing issue during the pandemic. Brett Watson, president of the Funeral Services Association of Canada, notes that many suppliers are currently mandated to only sell PPE to hospitals, creating a potential shortage if deaths continue to surge.

Despite these challenges, Watson is reassured by the rallying of support across the country and has been facilitating weekly conference calls with each of the provincial funeral service agencies. “It’s an opportunity to share resources and information and keep an understanding of what’s happening around the country,” says Watson.

This rallying of support seems to be universal across all sectors of healthcare, and can perhaps be considered a silver lining in this current pandemic. Ebru Kaya, a palliative care physician at Toronto General Hospital and treasurer of the Canadian Society of Palliative Care Physicians, has noticed increasing support for initiatives at her own local hospital.

“It’s been a way to demonstrate what palliative care can do and how it can support the community,” says Kaya, who is hopeful that this enthusiasm for championing end-of-life care will continue even after the pandemic ends.