Shruti Gupta is a palliative care physician at Sunnybrook Health Sciences Centre.
When COVID-19 was declared a pandemic, we knew that the way we practiced medicine was going to change and substantially affect how we care for patients. One key decision hospitals made early in the pandemic was to restrict visitors to keep patients and staff safe. Every day in my practice as a palliative care physician, I have been faced with the devastating effects of this necessary policy on patients and families.
Many of the patients I see have a terminal cancer diagnosis. A few months ago, one of my patients was admitted with metastatic cancer that had progressed despite chemotherapy, giving her a prognosis of weeks at best. We organized a family meeting to discuss the patient’s advanced illness and lack of treatment options. Usually, such meetings occur face to face but, given the visitor restriction policies, we had to deliver the heart-breaking news over a virtual video conference call. The meeting lasted about an hour. We answered all the questions that came up but I felt uneasy wrapping up the call, seeing the patient and her family in tears, reassuring each other that all was going to be okay. When I went in to check on my patient later that afternoon, she confided in me how difficult it was for her: to be crying and not have her family there to hold her hand, and to watch her children cry and not be there to comfort them.
This scenario has played out several times with many other patients since and I often find myself feeling as helpless as my patients and their loved ones.
The visitor restriction policy does have some exceptions. One that has been generally implemented across most health care facilities is that patients who are deemed to be in the last 48 hours of life are allowed to have their family visit in person to say goodbye. As a palliative care physician, providing end-of-life care is one of my areas of expertise and my team is often called upon for prognostication. Over the last few months, I have found myself in many situations where I’ve had to decide if someone is, in fact, in the last 48 hours of life, so that their family may be allowed visitation. No matter how many years one practices, the fact is that prognostication is hard. Everyone’s journey at the end of life is different. While there are some signs and symptoms that can indicate that someone is in their last hours of life, they are not always present, which means physicians often get it wrong.
In light of the current visitor restrictions, the consequences of such a misestimation are devastating. If I think a patient is dying but they live for several more days and their family has already visited, they may not be able to visit again when their loved one is actually dying. Conversely, if I think a patient may live for several days or weeks and dies in a shorter time span, then I have deprived their family of the chance to visit.
Recently, I cared for a patient with advanced dementia who was no longer eating or drinking but remained interactive and was maintaining adequate oxygenation and so, I did not think he would die imminently. However, one night, his oxygenation worsened within a span of hours and his family was called in. Thankfully, they were able to visit before he died. While I had provided the caveat that I cannot always predict the last 48 hours of life, I would have felt terrible if they hadn’t had a chance to see him. The burden of this decision is not taken lightly. As a physician, I pride myself on being an advocate for patients and families and working within the visitor restrictions at times feels like I am letting them down, as I witness families distraught and frustrated over the thought of their loved ones dying alone and not having the chance to say goodbye.
Patients do not have to be in a hospital for end-of-life care. For patients who choose to have end-of-life care at home, they need support from community physicians as well as equipment, personal support workers and nursing. Unless patients and families are able to pay for private caregivers, a majority of the responsibility of care still falls to families in most cases. For some, being at home is not a feasible option and they may have end-of-life care at a hospice or a palliative care unit. The pandemic has made this decision more challenging. While caring for their loved one at home would allow for the family to be together, it may jeopardize the health and safety of the patient and household members. The shortage of personal protective equipment (PPE) in the community might mean fewer home visits by the health care team and less support from the community partners.
I recently had this difficult conversation with an elderly gentleman, whose wish to go home for end-of-life care could not be safely honored given his high care needs and his wife’s failing health. It was deeply upsetting for both of them; they had been together for decades but could not be there for each other at the end of his life. The sadness in that phone call was palpable and the reassurance we provided that we would do our best felt inadequate.
While we are fortunate that many hospitals have been able to fund tablets that can be used to facilitate virtual video visits with families as well as meetings with healthcare providers, there are several limitations to this approach. At each hospital, the onus of organizing the visit falls on different providers, which can create inequity in how often visits occur. In addition, some families may not have access to the technology and internet needed to connect with their loved ones online. Even in the best-case scenario, the ability of families to advocate for their loved ones is diminished, and the element of human touch, which is key in providing comfort and reassurance, remains missing.
According to the Institute for Patient-and Family-Centered Care, “Patient and family centered care… redefines the relationships in health care by placing an emphasis on collaborating with people of all ages, at all levels of care, and in all health care settings…a key goal is to promote the health and well-being of individuals and families and to maintain their control .” With the COVID-19 pandemic the standard of care we strive to provide has been altered for the sake of public safety. The visitor restriction policy has taken away a basic tenet of patient-centered care and family-centered care. Many patients and families have expressed feelings of guilt, frustration and helplessness due to visitor restrictions; these experiences can lead to complicated grief.
Health care facilities must build programs to support grief and bereavement for patients’ families who have lost their loved ones during this time. Clinicians must remain mindful of the vulnerability of our patients and their families in these difficult circumstances and, at the same time, find a way to cope with our own feelings of grief and loss that often accompany these situations.
Thanks for the very insightful narrative. My question is: Does it need to be this way?
The patients that you described had NO COVID, and they have paid the price of dying alone. Why? The families had to experience two losses – their loved one and the ability to say goodbye, to hold hands, to strike the hair… Not only we don’t know when patients will die, but families would rather be present when their presence would be felt by the patient.
The tool on health care professionals is also an untold story, with an incredible potential for significant moral distress and moral injury. We know what to do, and how to provide patient/family-centered care and humane end-of-life care. This is what we do best when we can not save a life! We have been told we can’t! And there is no reason to have these restrictions so broadly applied, disregarding local contexts and not taking into account proper contingency planning. The easy way out was chosen by people who are not facing what you have described so eloquently because they are not at the front line. It does not need to be this way!
Shrunti -the type of information that you provided in your article should be posted on news websites. Our family had a very sad story as our daughter passed away on Oct 6/20. I am fortunate that I come from a culture where dying at home was a norm (does not mean that it is not sad). Despite the palliative care nurse insisting that my daughter should be in hospice with no visitors allowed. We chose home where family and friends were able to say goodbye. It was a very sad occasion but if I was dying that is the kind of death I would want. Death is natural the hardest part is saying goodbye forever. ❤️
Thank you for the work that you are doing and for sharing this article. I’d like to suggest a Canadian grief resource: MyGrief.ca. There are free virtual grief resources there for patients, families, and healthcare workers with more being added every month. The resources were developed with grief experts from across the country and people with lived experience. Take care and best wishes.
Excellent article. As an LTC medical director of 2 homes fortunately still Covid free I share your pain. As a doctor for 47 years it is impossible to predict time of death. We are blamed for restricting visitors and then if Covid comes into a home. Stress is when every answer is wrong.