Ruminations of a concerned and weary hospice physician~
Originally published Jan 19, 2021 on amytan.medium.com~
I just finished seven days of providing care to a whole unit of hospice patients. This means taking care of their symptoms with medications, but moreover, it entails answering the questions my patients who are well enough to ask of me, and those of their family members. On one day alone, I ended up conducting five family meetings for five of my patients. The family meeting is the “procedure” of palliative care. This is a critical part of the care we provide as palliative care clinicians because these meetings can shape the journey for both patients and families for an incredibly personal and poignant time in their lives.
I think it’s safe to say that the same is being experienced by all Canadians at this time during the SARS-COV-2 pandemic. Every single person is experiencing an emotional rollercoaster that is very personal right now. For many, this may be the single most challenging and isolating time in their life at a time when social isolation is required to stave off the vicious spread of this virus. Regardless of where the pandemic experience stacks in an individual’s life journey in terms of hardship, it has been hard in one way or another for everyone of us. The anxiety, fear and frustration among us all is palpable now, ten months into this “new normal”. As a Canadian, I’m worried and wondering what can be done to help with this collective distress, because we won’t have enough vaccines to actually end this pandemic for months to come. We must likely wait until the summer or fall before we will once again be able to safely hug each other and share a meal with those we cherish.
I’m worried that we can’t wait that long. Something different must be done now to help address the public’s distress.
Communication during a Public Health crisis is challenging. Every person in a population is the patient. Every person is distressed in some way. But I humbly think that pressers with media asking questions isn’t helping with the public’s level of distress anymore. Increasingly, we feel that the answers given are “talking points” rather than earnest addressing of the issues at hand. One-way communication is not helping the distress or adherence to public health measures. We can look to the successes that Indigenous communities have had with transparent, effective communication with active community engagement regarding COVID-19 responses.
As a hospice and family physician, I think that a more patient and family-centred approach, rather than the current paternalistic or maternalistic Public Health approach is needed so that people can feel heard and understood at these uncertain and stressful times.
In those five family meetings I conducted last week on the hospice unit, I was hit with a myriad of emotions and distress from my patients and their loved ones: stress about the prognosis, anger about a diagnosis not being made sooner, despair that a loved one was dying and there was nothing anyone could do to change the prognosis, spouses anticipating life without their life partner of 5 or 6 decades, disbelief that their loved one’s condition could have changed for the worse so quickly, desolation about how the pandemic was negatively impacting all factors for their family facing the death of the matriarch of their family, antagonism with working through family discord, and grief about the current visitor restrictions for their dying loved one.
Anguish, distress, fear, anxiety, anger, antangonism, fear of the unknown, uncertainty for the future. Sound familiar?
As part of my Master’s thesis project in Palliative Medicine, I developed a framework for having difficult conversations with patients’ loved ones that emerged after interviewing family physicians who provided end-of-life care for their patients. This has been seared into my consciousness and I use this framework subconsciously now in my clinical practice.
In addressing the palpable distress of my patients’ loved ones in these family meetings, I work to listen and validate their concerns, their anguish and their distress while gently correcting any misinformation they may have about the patient’s illness or diagnosis. This is a dance with the intent to help the patient and loved ones process this impossibly difficult situation, and not to be “right” or to defend the medical system. I can’t change the fact that my patients are dying in hospice (terminal illness has brought them to hospice), but I can help to change the journey of living until death for both my patient and their loved ones. I also strive to help the loved ones with their grieving that has already started in advance of their loved one’s death. I share with them that the situation they’re facing is unfair, that we don’t have all the answers in medicine, and that I wish so much that things could be different for my patient and their loved ones. I also try to introduce “Plan B’s” or the less palatable options that we could work through and what could be gained by thinking about these unwanted but perhaps necessary plans. I help them to reframe hopes and goals that are realistically achievable in the context of a patient who is dying, such as lessening pain, lessening shortness of breath, lessening confusion, while discussing what the trade-offs would be for managing these symptoms for the patient.
I always say in these family meetings that whatever information I have I will share with them as it is not my information to hold on to. It is also not about how hard things are for the clinical team during these family meetings; it is always centred around how the patient and loved ones are feeling. I work with them to understand, acknowledge and hopefully accept terrible news that no one wants to ever hear. False reassurance is paternalistic or maternalistic and worse than not helpful, as it can create more anxiety and harm.
I believe firmly that patients and families deserve to know whatever they need to know to process these difficult realities and to make informed choices for the time that is left for the patient.
It gives them a bit of power back in an otherwise powerless situation.
There are aspects of this approach that may be applicable and beneficial to help with the public’s distress around the pandemic at present. Specific areas that I see as origins of great public distress at present are:
-the horrific crisis in our long-term care (LTC) homes with 80% of deaths in Canada being in LTC, and the concerns around staffing, PPE, vaccines, living wages and paid sick leave for personal support workers,
-school safety and the actual rate of transmission to students in schools and the arguments over the false dichotomy between schools being closed or not (let’s work on mitigating risks IN the classrooms with universal mandatory masking in classrooms, ventilation improvements, smaller class sizes!),
-the fight to use of rapid tests within provinces (other than Nova Scotia) sent by the federal government in long-term care homes and/or schools to stave off cases and deaths,
-vaccine roll-out schedules and the seemingly haphazard (and at times unethical) determination of who gets their vaccine first,
-how far gone we are with the Test-Trace-Isolate strategy given the collapse of contact tracing in many jurisdictions,
-vaccine hesitancy concerns,
-the very slow uptake and acknowledgement of the science showing that aerosols and ventilation are a significant part of the transmission of this virus,
-the lack of an equity and anti-racist lens for the public health measures that is essential to protect the vulnerable who are already disproportionally impacted by COVID-19 (such as curfews not condemning those without a home to die in the cold or not having paid sick leave that would all people to stay home with symptoms and not worry about paying their rent or groceries),
-the confusion around the actual goals of the present restrictions and the chances that these goals will be achieved,
-the lack of clear or consistent metrics for the public to be able to track for progress towards a collective goal, and
-the siloed provincial and territorial approaches causing confusion in this social media age, and the lack of unified approaches and responses.
Simply dismissing the concerns of parents about school safety and saying that there’s hysteria about this among parents and teachers, evading business owners’ questions regarding the rationale for hours restrictions, denying the need to improve ventilation to mitigate the risk of this virus travelling further than 2 metres due to aerosols, or referring people to websites with out of date information to answer the public’s questions about how to incorporate safety plans into business and retail spaces isn’t working.
Opportunities for governmental or public health designates to be available to answer real and concrete answers to questions, while committing to following-up with feedback of the public’s experiences of implementing public health measures are needed. The raw data needs to be made available so that people who need to or want to delve further into the information can do so to answer the questions they may need to know to better cope during their personal pandemic journey crisis.
I ask every patient how much information they want and assure them that there is no question that is out of bounds. I also say that if I don’t have the information at hand, I will try to find any available information to help answer their question. Sadly, there are some answers that I won’t have because I can’t turn back time for my patients. But governments have the ability to collect and share different data (of course if there’s a matter of security that requires some data to be classified, that’s understandable, but don’t use this as an excuse to not show data) in response to the public’s questions during the pandemic. It should not be for the governments to determine how much information is too much or not enough for the public. Advocates and members of the public from many different perspectives and disciplines should be encouraged to ask questions and better yet, be invited to have open dialogue with public health and government officials to consider the breadth of expertise available in solving the complex problems of the pandemic. Questions must be answered earnestly by public health and government officials to address the public’s concerns with a goal for full transparency*. Rather than being dismissed and unwelcome to have opinions about a health crisis that we’re ALL involved in, the public and advocates can help to amplify the correct information and answers from these dialogue opportunities. Dodging questions or hiding behind complicated or incomplete data does not address the public’s distress.
Perhaps adopting an approach similar to a family meeting for patients with palliative care needs would help to give the public a sense of some power in an otherwise powerless situation.
While communication in palliative care is not the same as the communication done by Public Relations or Crisis Management firms in politics, I think an approach that brings back the focus on the unique human experience during this crisis is needed now.
I’ve mapped out this approach and how it could apply to the Public Health crisis at hand by adopting and revising the framework that we developed in our research in 2011.
More is needed during these hardest days with hospitals overwhelmed, increased cases, and new, more transmissible variants creating even more of a threat while there is fear and angst about the vaccines roll-out. Perhaps a new approach from government and public health officials could help with validating and acknowledging the public’s distress and the need for their questions to be earnestly answered. I would urge them to give it a try, for the sake of all of us.
*full transparency within reasonable security limits.