Palliative care, as we have observed, is no longer confined to end of life care alone. It is about quality of life at any stage of a debilitating and life limiting condition and disease. However, despite this, it has got associated with end of life care which some have tried to distinguish by calling it ‘hospice palliative care’. We now even have manuals for the last 24 hours. While there certainly is a place for this, I believe that this association makes it doubly hard for patients and their families to accept palliative care as it means not only that they will have to snap ties with a doctor who has been looking after them for a number of months, if not a few years, but will also have to accept that the end is coming near. As I heard a physician once remark, “we should rename it and call it “symptomatic care” to make it more palatable to both treating doctors and to patients and their families.” I am not sure that is the answer. The primary treating physician, usually a specialist, should not be let off the hook. How he or she reacts to the need for good [ Read More ]
When we started CanSupport’s home-based palliative care programme in 1997 in collaboration with the Institute Rotary Cancer Hospital (IRCH) at AIIMS, in New Delhi, we were a nurse and a counselor. As we began to visit homes we realized that we would have to quickly bring a doctor on board not only because a medical input was required, and only doctors in India can prescribe medications, but also because patients and families wanted to see a doctor on the team. “Where is the doctor?” is a question the CanSupport Home Care team is often asked when they walk into the home of a patient. The fact that the doctor may have a limited role to play in the prevailing circumstances, and is perhaps the least equipped of the team to deal with death and dying, is of limited consequence. It is a question of perceptions. In the eyes of the patient and the family the doctor has the ability to make things happen, much like a magician does, and therefore his or her presence helps keep unrealistic hopes alive. These unrealistic expectations in turn burden doctors and deter them from dealing with patients and their families in an open and [ Read More ]
It Needs a Trained Team & a Compassionate Approach One has to accept that while the dying process is natural, it is complex and fraught with many challenges. Not surprisingly, therefore, no one person alone, no matter how well trained, can deliver it with a high degree of effectiveness. It needs a multidisciplinary team, as along with pain and other distressing symptoms such as insomnia, dyspnea, depression, constipation, agitation, nausea, etc., emotional and spiritual distress also have to be dealt with. The need, therefore, is for caretakers who are self aware, sensitive, unbiased, good listeners, excellent communicators and team players. A few years ago, while accompanying a palliative care physician on his rounds in a hospice in the UK, I was struck by his pleasing manner. He was courteous, listened attentively and spoke slowly and softly. A far cry from the image of the busy doctor moving briskly from patient to patient, barking out orders and expecting to be obeyed instantly. I could see how reassuring each interaction was for his patients. The fact that he greeted them by name and asked them about their families further added to their feeling of comfort. Afterwards, I complimented the doctor on his [ Read More ]
Cicely Saunders, a young British woman working first as a nurse and then later as a medical social worker in hospitals in London in the 1940s, met a young Polish waiter, David Tasma, who was dying of cancer on one of her rounds. She had already noticed him and others like him who were in severe pain despite the medicinal concoctions routinely handed out to them. The most famous of which was the “Brompton cocktail”, named after the hospital that had initiated its use in Brompton, London, as well as the fact that it contained a generous amount of alcohol, usually gin, whisky and brandy. As a result of a series of conversations with David Tasma, Cicely realized that a busy hospital ward was not the place for people like him. Not only did nurses tend to pay greater attention to patients who were more likely to recover, but her hunch was that people at the end of life needed a different type of approach to their care and that no one size would fit all. Determined to learn more about the needs of the dying, Cicely began working as a volunteer at St. Luke Hospital’s home for the dying [ Read More ]
Dear readers, I am delighted to be able to share my views with you on this blog. I look forward to receiving your comments and views. Please feel free to express yourself but do remember that positive feedback always works best. Warm regards, Harmala. …………………………. The Supportive Team: When I was a child I was taught never to accept “nothing can be done” as an answer. According to my parents, there was always something that could be done provided one tried. I would like to add to this, from my perspective now as a tried and tested adult, provided one also has the necessary courage and imagination to do so. The worth or curse of a gift of imagination was brought home to me with telling effect when I was diagnosed with cancer. I realized then that one of the things that stood between me and my ability to tide over this personal crisis was how I was able to view it. Almost immediately, after the initial shock wore off, my imagination went into over drive, pulling me in every direction from one moment to the next. So, while one moment I was walking on the edge of a cliff, [ Read More ]
