Abstract
The German language has given humanity many unique contributions by generating compound words that convey concepts that are often difficult to translate into single words in other languages. What a wonderful legacy to bequeath to the rest of the world. Reflecting this, we are indebted to our German colleagues for the wonderful word torschlusspanik. It literally means “fear of the gate closing.”
Imagine that you were living in the middle ages. You were fortunate enough to be in a fortified town from which you went each day into the fields to work or to trade with neighboring villages. That sense of security of being within a walled town each night was crucial to your well-being. Ensuring that you were back before dusk when the drawbridge was raised or the portcullis was lowered (or both) defined the planning for any day. One can imagine hurrying along the paths and the roads as dusk approached to ensure that you were not left outside for the night, risking the perils that could befall you.
The less literal, more conceptual meaning of torschlusspanik relates to concerns and angst for what must be achieved in the time available in one's remaining life. Hospice/palliative care is about the art of the possible and built fundamentally around a single question “What is most important to you in the time that you have left?” Working with those goals and desires is central to the art of palliative medicine.
This implies that people know that they have a limited prognosis that generates a sense of urgency in the legacy issues that they face. 1 Our understanding of disease trajectories continues to evolve.2,3 There are similarities that are now well documented between end-stage organ failure and cancer with both sharing a long plateau period followed by a relatively sharp decline in functional status, with increasing reliance on the help of others. We can often convince ourselves and the patients that we serve that when patients are on this plateau, things are going to remain stable for a longer period of time than is actually the case. Such a plateau is often transected by a sudden and inexorable decline. Understanding the warning signs of that worsening in functional status is something that many patients value knowing because it gives time to reprioritize the time that is left.
Why is the concept of torschlusspanik important for us as service providers? As we consider the disease trajectories of so many illnesses, how we contextualize people's existential questions in the light of their probable prognosis and hence the priorities within each person's timeframe is one key skill to meet people's needs better.
As outlined by Tarbi et al. in this issue, existential challenges are very real for people who have life-limiting illnesses. If hospice/palliative care is about the “art of the possible,” the question that every palliative care clinician (allied health, nursing, medical) must ask is “What is important in the time that you have left?” 4 The fear of diminishing opportunities is a sensation that many people experience. Our ability to support people as they grapple with understanding that time may not be available to them is a key responsibility for hospice/palliative care clinicians.
The existential questions that are universal to humanity often only come to the fore as a person transitions from life to death. For the patients who you and I serve, the sense of rushing to ensure that everything is finished before the drawbridge is raised or the portcullis lowered is very real. How one prioritizes time and prioritizes dealing with existential issues (that many of us spend our lives avoiding) is a key tension for people with life-limiting illnesses. Reprioritizing (and reprioritizing again and again) is often what patients and their families need to do as a person's prognosis becomes clearer.
Working in hospice/palliative care, you and I have a key role in ensuring that people do understand our best estimate of their prognoses. This has to be on the patients' terms if, and when, they want to discuss this very difficult topic.
Imagine, then, facilitating tranquietas, Latin for “peacefulness.” How can we be the key? When we as fellow humans (not just professionals) can sit with our own certain death, face our fears, and experience the sense of urgency of precious time passing. It is important that we find our own sense of peace and acceptance of the inevitable. Then we can truly be present when faced with the struggle of the people whom we are here to support.
As reflected by Rosenberg et al. in this issue of JPM, honest conversations have lasting impacts and can reduce distress. It is vital that as clinicians in hospice/palliative care that we move from torschlusspanik to tranquietas ourselves and practice facing our own discomforts. This will allow us to speak honestly and gently to the reality for each person that we serve.
If we reflect what it would be like were it to be us in this person's situation, it may give us a greater sense of empathy and of willingness to discuss honestly and transparently what we see as their future. Such honesty may help some of our patients deal with issues that may have been postponed or never previously recognized in way that they and their families will appreciate.