Why are people still dying alone in our hospitals?

'We’re seeing a lot of stress, a lot of angst, a lot of self-blame and guilt in families.'

Vanessa Hrvatin 7 minute read June 17, 2021
covid dying alone

More than a year into the COVID-19 pandemic, care partners are being kept out away from loved ones. Getty

When you ask patient and caregiver advocate Julie Drury about people dying alone in hospital during the pandemic, she has a simple response: “We’re 14 months into this, why are we still letting people die alone? It’s a great question.”

Going into lockdown made sense for healthcare settings when the pandemic first hit because leaders had very little knowledge of the virus, says Drury. But she’s concerned that despite regulations starting to ease as vaccines roll out, many hospitals are still maintaining strict restrictions on hospital visits for essential caregivers.

“Research and evidence demonstrate really clearly that essential caregivers are more than just visitors in our health care system — they provide coordination of care, they carry the history and story for patients who might not be able to advocate for themselves and are very much part of the formula around patient safety,” she says. “To remove [essential caregivers] from the system in a sort of a long-term way which is what we’re entering into now has a lot of consequences.”

Drury is clear she isn’t advocating for general visitors to return, but rather that every patient should have access to at least one or two people they deem an essential caregiver. A report Drury co-authored found little evidence that COVID-19 transmission increases significantly when essential caregivers are in hospital, and the risk of removing them from the healthcare system is much greater than the risk they introduce.

“We’re seeing a lot of stress, a lot of angst, a lot of self-blame and guilt in families because they aren’t able to help their loved ones navigate the system and support them,” says Drury. “On the patient side, we’re seeing a lot of fear and anxiety about being in the system alone. And among healthcare providers we’re seeing a lot of what we call moral distress, which is that blocking out essential caregivers has challenged [providers] emotionally and in terms of providing care.”

So why are people still being kept out of hospitals, especially when a loved one is dying, when evidence suggests these individuals do better with someone by their bedside? The answer isn’t clear, but Drury suspects there are many contributing factors, one being political concern if a hospital has a COVID-19 outbreak. Another reason could have to do with staffing — essential caregivers require screening and often some form of training, which can be difficult when hospitals are understaffed and overwhelmed. Regional outbreaks also play a role, with a fear around introducing more people into a hospital setting if the ICU is filling up.

While provinces provide guidelines, healthcare centres are given autonomy on developing visitation policies, which is why restrictions can differ at any given hospital. Healthing.ca contacted hospitals in Ontario asking how decisions are made with respect to visitation policies, and why some places still have limitations on essential caregiver visits.

Unity Health Toronto — which encompasses St. Joseph’s Health Centre, St. Michael’s Hospital and Providence Healthcare — recently changed its policy to allow inpatients who are in hospital for longer than seven days to have two essential care partners visit for a maximum of three hours a day. There are some exceptions, including if a patient is at end-of-life.

When asked about restrictions, Unity Health responded with a written statement:

“We recognize family members and loved ones are important to the healing and overall wellbeing of our patients. As such, the presence of essential care partners continues to be a priority for Unity Health Toronto. Many factors are taken into consideration when changes are made to our visitor policies, and our number one priority is everybody’s safety. Unity Health Toronto established a working group that includes representation from patient family partners, hospital leaders, frontline staff and administration and this group meets regularly to discuss essential care partners and visitor policies. Decisions to limit or reintegrate visitors to our sites are based on the level of community spread of COVID-19, as well as guidelines from Toronto Public Health and the Ministry of Health.”

Like most hospitals, when the pandemic began, Hôtel-Dieu Grace Healthcare in Windsor, Ont. shut its doors to all visitors and essential caregivers. At the time it was the right decision, but it never sat well with Hôtel-Dieu Grace Healthcare chief executive officer Janice Kaffer.

“Before the pandemic, we had worked so hard on bringing [visitors and caregivers] in and having everybody involved in decision making at our hospital, so locking the doors and saying nobody gets to come in was really a stark change,” says Kaffer. “In many ways, that decision never settled with my staff, it never settled in the hospital, and it never settled with me.”

The average patient stays at Hôtel-Dieu Grace Healthcare for two to three months — that’s a long time to be alone. Kaffer says staff banded together to come up with a solution, and by June 2020 had launched the Designated Care Partner Program.

The program is straightforward: patients identify one person as an essential caregiver. This person goes through 1.5 hours of training regarding safety protocols and infection, prevention and control in the hospital. They’re given a badge identifying them as an essential caregiver and have mostly unlimited access to their loved one during the day. The program has evolved over time with some hiccups — a COVID-19 outbreak in the winter limited essential caregiver access. But to date, over 800 people have been trained through the program which was largely developed by the hospital’s Patient and Family Advisory Council.

This program was life changing for Joanne Laforet, whose mother underwent surgery just before Christmas. Because of COVID-19 restrictions she couldn’t see her mother for 20 days, an experience she describes as “horrific.” It wasn’t until her mother was transferred to Hôtel-Dieu Grace Healthcare that Laforet was trained as part of the Designated Care Partner Program.

Laforet says being shut out for nearly three weeks hindered her mother’s healing.

“Had the first hospital where my mother had her surgery been able to have a program that let me visit her, she would not have been out for over two months because I would have been able to maintain her level of emotional wellbeing and helped with her daily care,” she says.

Like Hôtel-Dieu Grace Healthcare, other groups across the country have prioritized preventing people from suffering or dying alone in hospital. Healthcare Excellence Canada recently launched the program Essential Together to help healthcare centres reintroduce essential caregivers. The program provides healthcare organizations with learning tools highlighting what other care settings have done and connects hospitals directly so they can learn from each other.

“This can be challenging because you have to do it thoughtfully — it’s not just about opening the doors to any comers, it’s about doing it well,” says Jennifer Zelmer, president and chief executive officer of Healthcare Excellence Canada. “If you have to work through everything from scratch that’s a lot of work to do, so that’s really what Essential Together is about, is helping to accelerate that process by taking something Waterloo developed and sharing that with Victoria, for example.”

As for Hôtel-Dieu Grace Healthcare, Janice Kaffer says the Designated Care Program will become a permanent fixture in the hospital.

“Some people have said to us that this is a pandemic program, and we say no it’s not,” says Kaffer. “We have moved to a place where key family members or support people to our patients are now part of the care team and why would we ever go back from that? It’s an incredible move forward.”

But it’s a step that won’t be easy for many other healthcare facilities, says Drury, most of which had just begun to embrace open family presence policies and 24/7 family visitation before the pandemic hit.

“COVID is going to leave a lot of fear and a trail of debris behind us as to how comfortable we are with bringing people back into these institutions,” she says. “But that really does need to happen to have a patient-centred, patient partnered approach to health care.”

This is the first in a series of stories exploring the impact of grief on Canadians during the COVID-19 pandemic.


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