by Dr Oo Loo Chan
The most common question thrown at me as a palliative care doctor, “Why do you choose to be in this field?” “It is so depressing.”
Palliative care deals with end-of-life care, but it is more than just terminal care, where the common, but not always accurate, image of someone gaunt and dying on bed comes to mind.
End-of-life starts when the curtain begins to fall over one’s life - when life is no longer open-ended. How fast this curtain falls much depends on how fast the life-threatening situation or disease is taking over. At times it can fall quickly, maybe even without warning. At other times, it can fall gradually or hang in limbo for a while before falling again, smoothly or in spurts.
Many of my advanced cancer patients move from one cancer treatment to another. They endure the challenges of treatment in the hope they will get better and that this end-of-life curtain will somehow be pulled back.
Yes, sometimes the curtain does get pulled back - temporarily or longer. Many times however, it doesn’t, (although the drop of the curtain in some instances may have been slowed down by medical treatment).
Sadly, often a person’s remaining time of life is focused on treatments, be it mainstream or alternative. This is usually at the expense of denying themselves the opportunity and energy for other (joyful) pursuits.
How does one strike a balance between not being consumed by these treatments, and yet still ‘live’ life? So often, I hear the response, ‘Wait till I get better’, then the possibility of that becomes increasingly remote, even as their energy and vitality slips in tandem.
Hope is essential in any life challenges. But how do we define hope in that phase of end-of-life? If all it means is to recapture the original state of physical health, then it is doomed from the start because even if the end-of-life curtain is pulled back, it already necessitates a new mode of living – often beginning with acceptance of limitations on one’s capabilities in this phase and certainly a review of one’s life. Yet, many of my patients simply struggle to accept that life is not the same again. And in some cases, even their families.
Using warfare words - no matter how well-intended - such as , ‘never give up’, ‘fight till the end’, even ‘be positive’ can be detrimental if used in the wrong context. It hinders any embrace of end-of-life, encouraging denial of the process of dying.
An atmosphere of taboo in the community about end-of-life is the major obstacle in this transition. It impedes conversations about end-of-life preferences, pros and cons of keeping diagnosis away from the patient, fear of death and even greater fear of incapacitation before death. It allows the lure of hope from unconventional, and at times, unethical, promise of cure to flourish. It hinders preparation needed for the final departure, and likely complicates grief of those left behind.
The challenge is to transition gracefully from “I can do all” to “I need some help”. Or even to “I need to let go”. Perhaps then, a good closure could be achieved for all.
Dr Oo Loo Chan is the founder of Charis Hospice Penang, a non-profit organization that provides free palliative home care services for patients with cancer and other advanced critical illnesses.