She was admitted to the hospital because she fell down in the house and had a fractured hip. She was unable to move due to pain and she was not fit for operation due to her general condition because of her disease.
This patient was referred to me for pain management. As a routine, I went through her case records, examined her, and prescribed medication for her pain and assured her that with these medicines, her pain would be reduced.
As I was ready to leave her bed, she asked me: “When can I go home to be with my children?” In the few minutes thereafter that I was with her, I could sense her emotional turmoil she was going through.
“I know she will never get better. Probably, she knows it too,” her sister in law told me as she walked out of the room with me. “I don’t know how to talk to her. What do I tell her?” She was suffering too.
Even after a week of that visit, I was still worried about this patient. She was being looked after by a physician, medical oncologist, and an orthopaedic surgeon.
Contrary to her medical problems all of us were trying to fix, our patient’s real worries and problems were never likely to make it to the chart that faithfully recorded her physical parameters.
I was disturbed by an excruciating game of hide and seek happening between this patient and her sister in law, unfortunately all too common in such circumstances.
I spoke to her oncologist, who agreed for me to consult with them beyond just pain management.
Refusing to let go
Advances in medicines and medical technologies have increased life expectancy and people have come to expect to live forever. Many diseases which were life-threatening once, have easy remedies now.
There was a time when most terminally ill patients were cared for at home and allowed to go away in peace, surrounded by their loved ones.
Today, they are rushed to hospitals. Our unrealistic hope is that once we take the patient to the hospital, he or she will get cured.
Doctors are trained to try every heroic remedy possible. Technology can keep vital organs functioning for long periods of time.
This way, quantity (duration) of life can be increased. Finally, the patient ends up dying in the sterile isolation of the ICU.
Instead of soothing words of love, the last thing the patient hears is the beep of the monitor. Instead of the touch of a beloved, they possibly fade away feeling the discomfort of many tubes and needles. A final tender goodbye stands no chance.
Is this the quality of life we expect for our loved ones?
In today’s world of sophistication and specialization whose job it is to look into all these issues? Doctors? Patients? The family? All of us?
Cure sometimes, but Care always
Yes, promoting Palliative Care might address these issues to a large extent.
Even after 25 years of starting first hospice in India, palliative care is still a budding speciality of medicine. Most often, it is equated with ‘end of life care’.
The role of palliative care is to ensure that patient and the family can enjoy as good a quality of life as possible.
These efforts can go hand in hand with curative efforts. Palliative care physicians can help to reduce pain and manage other symptoms.
The palliative care team keeps communicating with the patient as well as their family on an ongoing basis, sharing crucial health related information with them in a clear and in a sensitive manner. These open discussions may facilitate informed decisions.
End of life care is a part of palliative care given to people who are in their last weeks of life.
It is the responsibility of a good healthcare system not just to cure whenever possible, but also to ensure that the dying get to live a life of comfort, dignity and respect.
A cure may not always be possible; care always is.
Death as a measure of life
Even if we live in a society that “accepts” death, we barely converse about this subject. Death is not a disease; it has no cure. It is the natural progression of life. The quality of our death is a good measure of the quality of our life.
Having looked after many patients who eventually died, I feel people are not afraid of death, but rather of the ‘process of death’. It is not easy to imagine leaving all your precious belongings here and preparing to go to the unknown.
If we want to improve the experience of dying in our country, the first step is to start talking about death. Otherwise our families will not know what is important to us.
Only by talking, can they be equipped to take decisions on your behalf when you are not in a condition to take your own decisions. This will reduce needless agony and will help improve the quality of life – of the dying and of the living.
Quality of Death Index
In 2010, India was right at the bottom of the 40 countries surveyed by the Economist Intelligence Unit Quality for the Quality of Death Index.
In 2015, India is placed 67 out of 80. Availability of and access to palliative care is an important criterion in deciding quality of death, and, for that matter, quality of life.
Clearly, India needs to do a lot more for its citizens. Last year, the Indian Association of Palliative Care and Indian Society of Critical Care Medicine jointly formulated guidelines for end-of-life care. When it comes to implementing those, we have a long way to go.
If we want to improve experience of “better dying” in our country, the first step is to start talking about it. Otherwise our families will not know what is important to us.
Learning from hidden patients
Coming back to my patient, she passed away few days ago. She died at home, with her family around her. They were all prepared. “We will always miss her. But she was comfortable. We talked. She has told me how to look after her children, and I will remember it always. All thanks to you,” her sister-in-law told me.
Not me, I corrected her. Thanks to my colleagues at the hospital, who recommended the transition to the right kind of care at the right time!
Learning from hidden patients and their life, let us begin by asking for palliative care!! It is all about having realistic hope!!
Dr Priyadarshini Kulkarni is a palliative care physician and the honorary secretary of the Indian Association of Palliative Care (IAPC). IAPC is organizing an international conference in Palliative care in Pune in coming February. This conference aims at improving insights about palliative care. More details about the conference can be found on www.iapcon2016pune.in