Our ultimate goal, after all, is not a good death but rather a good life to the very end
The processes of aging and dying are turned into medical experiences, things that to a certain extent can be managed and prolonged. Reaching an advanced age no longer has the value of rarity and life expectancy has climbed like never before due to improvements in nutrition, sanitation and medical care. The most common curve of life now resembles a long and slow fade, with increased frailty and multimorbidity at the end. Fortunately though, we can prepare for it, as we prepare for things all our lives - which school do we want to go to, what kind of job do we want to do, will we marry or not - children, travel, sickness,... why not the end of life and death as well? Becoming older invites us to think about what would make life worth living and what might still make us happy. We should all at least be asked the question ‘if you are unwell and not able to communicate your preferences to others, who would you want to speak for you? What would you want them to say?’.
Advance care planning (ACP) enables individuals to think ahead and define their goals and preferences for future treatment and care. It is a process that involves multiple conversations to identify a surrogate decision maker, to explore an individual’s values about medical care, complete advance directive documents, and translate values into care plans. ACP has been shown to have a positive impact on both the individual and those close to them and is widely considered to be an integral part of best practice long-term care.
Nursing homes are experiencing significant pressures to provide optimal care to severely ill residents and are disproportionally hit by mortality due to COVID-19. Older nursing home residents who already have greater burden of chronic illness are more likely to develop severe infection —exactly those who may wish to forgo invasive often unnecessary treatment and who may find their quality of life unacceptable after prolonged life support. There are many happy, engaged elders in their 70s, 80s, 90s, and 100s who would not want to be put on a respirator if they become critically ill from COVID-19. The absence of knowing a patient’s care goals, whether their goal is aggressive, supportive, or palliative care, might increase suffering at the end of life for both patient and family. However, both before and during this pandemic, studies consistently show the implementation of ACP in routine nursing home care practice still is a worldwide challenge, and research has failed to provide recommendations on how exactly ACP can be successfully implemented in the complex setting of a nursing home. One where staff is often responsible for delivering difficult care under suboptimal circumstances.
Towards successful advance care planning (ACP) in nursing homes
The increase of older adults, chronic diseases and healthcare costs, has resulted in end-of-life care being one of the most urgent societal challenges at EU level and beyond. This PhD project intended to increase value through the theory-based development and evaluation of a complex intervention, using qualitative and quantitative research methods. I first explored what was the current situation in nursing homes and what were the conditions for successful ACP implementation, via a systematic review of scientific literature and a local context analysis of the strengths, weaknesses, opportunities and threats. Together with a diverse group of stakeholders we then developed a model of effective change, based on the best available clinical evidence, that would enable us to prioritize how resources were to be allocated, and to identify the outcome metrics that would eventually help to ensure optimal delivery. We then developed a standardized model to implement and deliver ACP in routine nursing home care, with sensitivity to the local context and organizational and logistical difficulties. This was tested for its effectiveness in a clinical trial in 14 large nursing homes, using questionnaires to study effects and changes in knowledge, self-efficacy, practice and care. Via predetermined process metrics examined via interviews, focus groups and routine data, we were able to examine whether specific elements contributed to the success of the implementation.
I did it! Roughly, I rode 6960 km or 4324.74 miles from and to all the participating nursing homes to carry out my PhD study, which is equivalent to driving by car from Brussels to New Delhi in India. In the beginning of this PhD project, I made a list of everything that I needed to get done to complete it. But as it turns out, to reach your goals, support and help from others are invaluable. Approximately 700 care professionals, 300 support staff (including administrative, cleaning and technical staff), 200 volunteers and 200 primary physicians were involved in this PhD. Hence, a shout out to all those brave people; and to all the people who had the courage to speak up and let others know what they value in life and what they would prefer at the end of it. I do want to apologise to the environment. We have printed out roughly 54,488 sheets of paper to distribute our questionnaires. The rule of thumb is that a cord of hardwood (128 cubic feet) weighing two tons will produce 1,000 to 2,000 pounds of paper. So, to arrive at the number of trees needed for a ton, an average 8-inch diameter trunk to a usable height of about 45 feet. Applying the simple πr2 formula to get the cross-sectional area and multiplying it by the height, we roughly used three entire trees to conduct this research. Of course, these are all fairly rough estimations, and I weighed things on the bathroom scales, but you do get the general idea. I can sincerely promise however that this vast amount was not wasted and was put to good use for science, and hence will hopefully improve future clinical practice. My friends will laugh out loud, but I am currently also trying to eat vegan to compensate.
Coming up, Season two: what to expect
I have a strong wish to devote my research career to establish optimal end-of-life care practice and policy, especially in those who are frail and disadvantaged, and to disseminate results into education and training in the field. Within my PhD, we have made great progress in taking important steps to improve the quality of care in nursing homes, both fundamentally and applied. With several collaborations currently underway, and some more in the pipeline, all because of the much-appreciated support from FWO, Atlantic Philanthropies, Fulbright and BAEF, I have the opportunity to develop a follow-up research project in dementia.