Gallifreyan Transformation of Our Patients

Abstract

During the day I was too tired to work, during the night the hammering in my back prevented me from sleeping. I was neither daily nor nocturnal, but suspended outside the limits of either existence. I was neither functionally present nor accountably absent. I lived my life out of place.

—Arthur W. Frank

With apologies to the tens of millions of Doctor Who fans in the world, his feats as a Time Lord are being continuously experienced by many hospice and palliative care patients and predate the doctor's first appearance on our television screens more than 50 years ago. For those of us not immersed in the world of Time Lords, a key distinguishing feature of Gallifreyans is their nonlinear experience of time. Many things can influence our experience of the passing of time but as the end of life approaches, changes are often amplified. As a life-limiting illness progresses, time moves from infinite (‘I shall end today in the same good health in which I started it’) to finite (‘Death is now a looming reality’). For many people this progression requires significant reframing of what is important in life and what needs to be achieved in the time remaining.

Contrasts and Paradoxes

As function declines and daily routines change to accommodate increasing fatigue and physical limitations,² time may start to drag. This is a significant transition point. Time may lose its meaning in the absence of purposeful routines,³ and this inability to participate in purposeful or valued activities can lead to changes in perception of self and in meaning in life. As fatigue worsens, almost every task takes more physical and emotional energy. Hand in hand with some periods of time dragging, people may experience time passing more quickly than it ever has before. The pleasure of a visit from a friend or family may pass all too quickly, and the visit is over. A person sits down for a brief moment after breakfast and wakes to find it is afternoon and the day seems wasted. The experience of the passing of time at this stage of a life-limiting illness therefore can telescope in both directions—going more slowly and more quickly. There is a self-imposed pressure to make the most of time because it is limited, yet during the periods that time drags, it is wished away. Time moves slowly when there is nothing to do and yet, paradoxically, time is running out.

There is a second transition that occurs: when even those pleasurable interludes that have been a focus of anticipation become burdensome and no longer a focus of joy. The reality is there may come a point for many people when time becomes the enemy—torn between wanting to live and make the most of every moment, yet wanting the struggle to be over. At the end of life it may well be that this transition point is where life moves from being bearable to increasingly unbearable. It is likely this also coincides with increasing periods of introspection and withdrawal.

Time is at its most precious when its personal end comes into focus. Making the most of time becomes progressively more difficult as the challenges of using more and more energy to do less and less become all consuming.

Clinical Implications

As clinicians, how respectful are we of patients' limited and fast disappearing time and energy? Consider four areas where we can make the most difference:

1. How do we ensure that we are systematically developing and applying the very best evidence available (and not simply relying on local lore) to ensure our interventions have the greatest likelihood of being right the first time, and are as closely tailored to this person and his or her needs as possible?

2. Iatrogenic harms steal time from people when their frail bodies cannot tolerate even the slightest setback. How do we systematically minimize the risks and consequences of what we as clinicians suggest? How do we capture systematically the harms that our treatments may create so as to minimize these harms for subsequent patients?⁴

3. Do our outpatient clinics or office appointments honor people's limited time by ensuring that they run on time and that people are not sitting in waiting rooms unnecessarily?

4. We may think that home assessments address the problem of waiting rooms and save visits to clinicians' offices or hospital outpatient clinics, but only if people don't spend time cleaning and tidying ‘because the nurse or doctor is coming this morning.’ Home assessments may be, in and of themselves, incredibly burdensome.

For the latter two, are we adapting to rapidly changing technologies that may allow much more patient-and caregiver-centered clinical encounters such as telehealth consultations for people at home?⁵ Advantages include that the house does not need to be made ready for visiting clinicians; people at home can continue doing whatever they want to even if the nurse, doctor, or social worker is running a little late; the burden of travel for patients is eliminated; and clinicians can reduce travel time for visits that do not require hands-on assessment or care.

Meaning at the end of life is intensified in the face of an ever-changing, nonlinear experience of time.⁶ It is of paramount importance that we are continuously mindful of the potential impacts of our interactions on patients' precious time.

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