While the worst of the COVID-19 pandemic crisis appears to be behind us, and we are emerging from the heightened state of response, we can see more clearly the devastation in healthcare COVID-19 caused. There hasn’t been one service, or one health authority, that hasn’t been affected. The news media is full of stories about surgical backlogs, delayed diagnosis of cancer and other illnesses and the change in clinician’s practice to utilize other methods of “seeing” patients. In the world of palliative care, the changes have been more subtle but just as disturbing. And distressing. For both the clinicians who practice within the field, but also the patients and families we serve. The difference between us (palliative care) and the other field of medicine is only recognition. We rarely make the news.
During the pandemic, palliative care struggled alongside all the other fields of medicine and surgery. While our work wasn’t stopped, as it was for many of our surgical or interventional colleagues, we too had to rapidly pivot. While the brunt of the movement of resources went to isolation, acute medical wards, emergency rooms and ICU, and quite rightly so, resources were often pulled from areas that were considered less necessary. This included staffing, cleaning, supplies, and other supports. Managers and staff nurses were pulled from “quieter” locations, such as surgery, interventional radiology, and palliative care, as the patient loads and work those areas normally did were suddenly decreased due to the initial public health restrictions. The ICU, the emergency rooms, the medical floors, became ground zero for the effort against this new and clearly dangerous germ. Supplies flowed into these areas at a high rate. Staffing needed to increase. Cleaning staff were tasked to reduce the spread of disease by scrupulously sanitizing all areas. The focus was on the acute care of seriously ill patients and the prevention of spread.
In palliative care units across the country, the symptomatic and the dying still arrived on our doorstep or called for help. In many places there were strict rules about admission and adherence which was costly in terms of manpower and resources. Some patients died before they could successfully clear all the required criteria for admission. In the early days of the pandemic, for example, a negative COVID-19 swab was required prior to admission on my unit, and this was not as fast a procedure as it is now. Initially there were no rapid tests and patients had to present themselves to a testing clinic in order to be swabbed. In some places, community health nurses were not permitted to visit homes and housebound patients couldn’t get a swab. Some patients didn’t have community health support in other ways as well. For example, where I work, it is the community health nurse who will prefill syringes with opioids and other medications that palliative patients in the home depend on. When the public health restrictions were at their tightest, in the early days of the pandemic, in some locations, that service was curtailed. Community health had a massive job of attempting to identify and contain the contagion. While palliative care is always considered important within the community health field, COVID-19 took precedence.
Palliative care clinicians now had a large number of patients who were isolated at home and trying to cope in challenging circumstances. Many patients were separated from family or friends, those who normally helped the patient remain independent. Now, the restrictions prevented children from visiting elderly parents, to keep laundry, groceries, and assistance with normal activities of daily living, in check. Palliative care clinicians found themselves, often at the end of a telephone, with a distraught patient, who couldn’t figure out what pill bottle to open, or was struggling to use the bathroom, or had no one to prepare a meal for them. As well, the clinicians fielded calls from the distressed family members who were not permitted to travel or enter another’s home. Patients and families struggled with understanding that COVID-19 regulations applied to all, even the dying. The unfairness was hard to bear. For everyone.
We were initially as isolated from our patients, as they were from their loved one. We struggled to properly assess symptoms over the phone or with video access. Without the benefit of being able to physically examine our patients, determining pain, or shortness of breath, or a myriad of other symptoms, was difficult. Worse still, were the patients who were sliding into delirium. Phone assessment was certainly limited in that instance. At times it was dangerous to a patients wellbeing.
Most of us struggled with new technology. While there are some technically savvy clinicians in every field, many found adapting to video platforms, an exercise in frustration. Health authorities seemed to assume that everyone would catch on quickly. But frequently there were issues with the technologies, with passwords, with internet connections, and everyone, including the overworked IT support personnel, became frustrated and short tempered. Palliative patients, now required to have their interactions at a distance, had the extra frustrations of trying to get the technology to work. It is hard enough to meet a new physician, especially one whom you assume is going to give you very bad news or talk about unpalatable topics, and you can’t get the camera on your computer to work properly. Many of our patients suffer from profound fatigue. Finding the energy and concentration to take on new technology was beyond reasonable, for some.
I believe most palliative care clinicians go into the field because they like being with their patients and touch is an incredibly important aspect of that interaction. The enforced distance was traumatic. Many clinicians use touch to convey a variety of emotions and to deeply connect with their suffering patients. We also use touch with our colleagues; hugging is comforting when anyone of us is distressed. But now it was banned. Bringing in edible treats to share was forbidden. Any social gathering of colleagues was not permitted either. In addition to the things that were removed from our lives were the new things that entered it. We needed protective clothing, including masks. Everyone struggled in the early days to don the appropriate gear and then get it off again, without contamination. It was hot and uncomfortable to work for any length of time. Facial expressions became much harder to read. This was crucial as many patients use body language to convey concerns and emotions that cannot put into words. Voices were muffled with masks. Those who depend on lip reading to supplement sound, and there are many people who do this and are not aware of it, were at a distinct disadvantage. We had to maintain distances. Meetings could not be conducted in rooms, but pivoted to video connections and was done in isolation. Clinicians stood at the end of the bed rather than right beside the patient. Unconsciously, this sent messages that we in palliative care, strongly strive not to give: keep your distance, stay alone, you aren’t important to me. As clinicians, we had to be conscious of these unspoken negative messages our protective clothing and our physician distance telegraphed unconsciously to our patients.
When it came to providing medical assistance in dying (MAiD), things were more complicated. Many patients are not fully aware that this is an option for them. Or if they do know, they may not feel comfortable or empowered to raise the issue with their clinician. Many will hint or use their body language to indicate that they have something on their mind. When there are barriers, such as masks, physical distance, protective clothing, or the use of video/telephone, many of these subtle clues can be missed. In those instances, the clinician may not realize there is more to talk about or that MAiD could be listed as a topic for discussion. As well, the focus on the pandemic, left many clinicians distracted with managing COVID-19 or the many issues that resulted from it, and MAiD dropped lower on the list of priorities. It was more challenging to find staff willing to provide MAiD in hospital when everyone was short-staffed or seconded to other work. It was challenging to provide MAiD in the home when there were significant restrictions on home visiting.
However, despite enormous challenges, palliative care carried on the best it could. And patients still obtained MAID, albeit in smaller numbers and with greater difficulty.
There are deep seated issues with many clinicians about the negative consequences of not connecting with our patients in the manner we were used to, and in the manner, we consider is highly important. It will take time to lessen the guilt and distress for many within our field. Countless clinicians feel guilty about all the patients who died alone, with no one to comfort them, because the restrictions to visiting in the institutions we practiced in, were so tight. We still carry the scars from every patient and family member who called in to us in distress, sobbing on the phone because they felt they had nowhere to turn, they were frightened and couldn’t get the care and support they needed. When you purposely enter a field of medicine solely to help people with their suffering, it breaks a piece of your soul each time you cannot achieve this.
Now, the true impact of COVID-19 is beginning to be seen. The healthcare workforce is exhausted and burned out from over two years of distress and pressure. But the number of patients we are seeing is higher than ever. Every person who had a problem that wasn’t dealt with during the height of COVID-19 has shown up, needing answers. The numbers of CT scans, blood work, colonoscopies, ultrasounds, and hundreds of other investigations are through the roof. Wait lists for consultations with specialists are growing longer. And while people wait to get their diagnosis, their disease or condition continues to advance. In palliative care, we are now seeing more patients who disease has been found too late to be cured. Those patients have the added burden of anger and frustration and a sense that life would have been better, if only for COVID-19. This adds significantly to the burden they carry. And it impacts their ability to cope with the devastating diagnosis.
This was a perfect storm for disaster.
I believe that we will overcome. In the same way we rose to the occasion of COVID-19, we will survive the devastation of COVID-19. Those of us who enter healthcare, tend to place the patient first. We focus on what they need and how we can obtain it. This desire to see the patient is well looked after will help us focus our energies and creativeness. Eventually, the tide will turn, and the numbers of new patients will return to baseline, as the excess that COVID-19 created, gets sorted out. Those of us who stay in clinical practice will carry on. I believe in the resilience of my colleagues. Our willingness to help the most vulnerable in our society, will not diminish. That, while we may be down, we are not out.
They say that with every storm there is a silver lining. I believe that. COVID-19 taught us invaluable lessons about how we treat the elderly and institutionalized. It highlighted the inequities inside healthcare and society. It demonstrated how important human contact is for our physical and mental health. It showed us how we could pivot, embrace new ideas, change plans midstream, create solutions, rapidly and completely. The field of palliative care was created within a medical system that ignored and mistreated the dying. We were able to create a safe space within healthcare for that patient population against great odds. It took time and perseverance, creativity and persuasion. MAiD became law to help those who wished to end their suffering on their own terms. It’s route to realization was long and difficult too. We have won the battle in the past. We will do so again.
Dr. Susan M. MacDonald, MD, CCFP, PC, FCFP is an Associate Professor of Medicine and Family Medicine at Memorial University in Newfoundland. She is a teacher, leader, researcher and clinician renowned for her progressive dedication to providing care for the terminally ill. She has made it her life’s work and purpose to garner respect, understanding and
compassion for the dying.
Dr. MacDonald’s article in the May 2023 edition of Healthcare Management Forum can be found here.
Healthcare Management Forum 