Rahmath

Rahmath died a couple of days back at the age of 53.

It is a good rule not to have favorites among patients. We should give them all our unconditional love and unconditional respect, whether they are smiling or crying, perpetually thankful or perpetually complaining, cheerful or grumpy.

But it was difficult not to give a special place to Rahmath in our hearts. Few people lived with so many adversities in life – very difficult family situation, poverty, and a cruel, unrelenting autoimmune disease (systemic sclerosis) which gave her unbearable pain in all four limbs and elsewhere.

She smiled through it all. She had little to give, but gave plenty – in smiles, expressions of gratitude and always, always, prayers. She would travel 225 kilometers each way in a five hour train ride for every consultation, and we could expect her never-failing call the next morning to reassure us that she got back home by midnight, yes, thank you, she is pain-free now. And then she would name every single member of our team whom she met the previous day and convey her thanks. And she would repeat, she would pray for every one of us, “That is the only thing I can do for you”.

She taught us fortitude. She smiled through suffering that few of us could possibly have lived through. Yet, when the suffering would become overbearing, her eyes would fill, as when she described how her two grandchildren who lived in an orphanage begged to be brought home to their mother during the summer vacation. Eventually, with some slight help from us, she and her daughter-in- law overcame the unbelievable barriers and it was such a joyous occasion for her when the children could be re-united with their mother.

Our guest from USA, Mrs Sunshine Mugrabi wrote about her:

Her smile is a wide as her face, accompanied by a bright twinkle in her bright blue-gray eyes. Her cracked teeth are spaced far apart. When she smiles it looks as if her entire being is infused by some wellspring of private joy. Pain cannot touch it, and in this, she touches everyone around her.”

During the last few days of her life, her suffering became intense. Dr Hyder Ali, Dr Susan Jaya Koshy and the rest of the team at Anwar Palliative Care Unit at Aluva took good care of her. But on the final day of her life, she insisted on coming back to us in Trivandrum. She traveled those 225 kilometers again in an ambulance, breathless, blue in all four limbs, and with a pain score of 10 out of 10. We feel so privileged to feel that we could give her some pain relief and peace during those last few hours.

Goodbye Rahmath. You gave us a lot and taught us a lot. Rest in peace.

The “Workshop for Patient Safety in Healthcare Facilities” (pdf) was organised by the Department of Hospital Administration of All India Institute of Medical Sciences at New Delhi, in collaboration with WHO (India).

This was the sixth workshop in which participants from 20 different medical colleges in different states of India participated. The meeting discussed, and generated action plans for several essential features for patient safety including surgical safety, infection control, drug-related factors and so on, but also communication as an important factor to ensure patient safety. Teams from participating Medical Colleges prepared action plans to improve communication within their institutions.

Col. Pawan Kapoor & Dr Mhoira Leng at NIPS

We believe that NIPS is a major and pragmatic initiative with the potential to make medical practice safer for 1.2 billion Indians. Inclusion of communication skills as an essential feature of NIPS shows the organisers’ vision.

Kudos to you, NIPS team! Pallium India considers it a privilege to be associated with you.

Promotional video on National Initiative on Patient Safety:

credit: mynameisharsha

An article by Dr Robert L Fine from Dallas, Texas, USA in the Journal of Pain and Symptom Management (Vol 40, No.4, October 2010) highlights the importance of patient-centered care.

He asks, what would you do when the patient who has gone through dialysis for many years, at the end of his life expresses a wish not to be resuscitated and then becomes too weak to argue, and the family insists on resuscitation for “religious reasons”?

The obvious answer would be to go by the patient’s wishes, but it is not an easy thing for the team to do, when faced with the angry family. (In India, often, the family would simply take the patient away to a high-tech hospital in the face of such confrontation).

Dr Fine suggests that often physicians “acquiesce to the most insistent voice in the room”. The patient is weak and is less liable to be heard any longer!

He says, ‘among the rationalizations… for such avoidance behaviors are, “I’m getting paid to do the wrong thing, but that’s the system we live in and it’s not my problem to fix”, or the more cynical, “The patient should have chosen a better family”. Another common excuse….is “Dead patients don’t sue, but angry relatives do”.

The author goes on to explain the importance of keeping the focus on the patient. Taking decision-making away from individuals to “ethical committees” can help resolve the problem. Indeed!

Keeping the Patient at the Center of Patient- and Family-Centered Care

Abstract – The practice of palliative care typically refers to the focus of treatment as the patient and family. Tending to the needs of both patients and their families is usually good, but what should clinicians do when they perceive the best interests, needs, or treatment preferences of the patient are in conflict with those of the family or other surrogate?

Physicians may be able to suppress the inevitable moral cognitive dissonance of such circumstances, write orders, and walk away, but other health care professionals, especially nurses, may not have it so easy. This article suggests practical steps to obviate conflict in such circumstances before offering an ethical analysis focusing on notions of autonomy, beneficence, and true caring for patients, especially those near the end of life.

The limitations of surrogate decision makers are considered and legal liability concerns are briefly explored, ultimately leading to the conclusion that keeping the patient at the center is sine qua non of patient- and family-centered care.

Conveying powerful messages about untreated pain and about end-of-life decisions. Very very powerful.

Of course it is all about USA.

So when you have finished watching it, please give yourself a minute to think about 80% of the world – the developing world.

What sort of torture goes on there?