Adding life to the last days of terminally ill
The Full-fledged professional hospice care is attributed to Dame Cicely Saunders who pioneered the first hospice — St. Christopher’s in London in the 1950s.
Article by Dr. Lavina Noronha in the Deccan Herald, October 11th, 2011
It was only in the year 1986 with the opening of ‘Shanthi Avedna’ in Mumbai that hospice care arrived on Indian soil.
The world is celebrating another International Hospice and Palliative Care Day on October 8.
Yet, there is ignorance about this branch of health care. A hospice is a place of hospitality which provides palliative services consisting of physical, psychosocial, and spiritual care for people with life-limiting illnesses and their families.
This approach of care allows terminally ill patients with a prognosis a few months to die in a comforting environment at their own pace and naturally without technological invasion.
Places of care for the sick, the wounded and the dying existed since the 11th century all over the world. However, full-fledged professional hospice care is attributed to Dame Cicely Saunders who pioneered the first hospice — St. Christopher’s in London in the 1950s.
It was only in the year 1986 with the opening of ‘Shanthi Avedna’ in Mumbai that hospice care arrived on Indian soil. Today there are a number of hospices serving the terminally ill throughout the country most of which are located in major cities with an exception of Kerala where palliative care movement is widespread even in remote villages. In countries like the UK and the USA, an estimated 55% of the hospitals have palliative care units attached to them but in India, palliative care is still in its infancy which simply means we have a long way to go.
The goal of hospice care is to focus on the quality of life and hence, aggressive life-prolonging medical equipment like ventilators, monitors and other life support systems are of little use here. Family members are able to spend quality time with their loved-ones until they slip away which is not possible in an ICU where the prying and prodding can cause more anguish to the already distraught patient at the end of life.
A multidisciplinary team of physicians, nurses, social workers, counselors, chaplains and volunteers provide holistic comfort care at a hospice. Firmly rooted on the premise ‘curing is not always possible but healing is,’ the hospice philosophy, with its person-centered perspective provides an opportunity for patients and their families to experience this healing at physical, psychological and spiritual levels so that they can embrace the end in peace.
On a psycho-spiritual level, patients often grapple with deep, philosophical questions about life and death and consequently, anger, denial, shock and guilt are some of the common reactions manifested. Geeta, a 58-year-old patient suffering from lung cancer laments often “I don’t deserve this, why did God punish me?” A hospice becomes a safe haven for people like Geeta who are gently prepared to accept the inevitable.
There are instances where even the family goes on a guilt trip and ends up second guessing the actions when they opt for palliation and stop aggressive interventions.
“Are we abandoning our family member? Have we done enough?”
These were the concerns of the D’Souzas when they first made the decision to admit Sebastian, their 29-year old son into the hospice unit. However, one week into the program, they knew they had made the right decision. Sebastian was suffering from an aggressive bone cancer which had left him bed-bound for more than 4 months. Thus families require constant reassurance that they are not giving up on their loved ones but are increasing their comfort levels by choosing hospice care.
One of the challenges in hospice/palliative care is that death is still considered a taboo. Families of end-stage patients need to know that the end will probably be very unpleasant- there could be wounds, edema, breathing difficulties, fluid in the lungs, inability to take food, etc. Patients may need constant monitoring for pain, nebulization, suctioning, etc to help them feel better. Orienting them to worst case scenario is often helpful in getting ready for the end both emotionally and spiritually.
Finally, not how long but how one lives matters the most. It does not mean however, that hospice/palliative care hastens death. In this “low-tech high touch” approach, care is given preference not cure. Everyone deserves respect and dignity and has the basic human right to have a peaceful, pain-free end to one’s life.
Click here to read the original article on Deccan Herald
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