THE WINGS OF PALLIATIVE CARE

“Having emerged stronger from the loss of the one person I loved the most, more confident from all the body shaming and character assassination, more determined from all the discouragement, I stand tall, proud of who I’ve become. I know pain.”

Anushka Reddy Marri
Final MBBS Part II
Rajiv Gandhi Institute of Medical Sciences
Adilabad

Palliative care, comfort is given to the patients with a terminal illness and support to the family members, focuses on improving their quality of life by preventing or/and treating the symptoms and side effects of the disease affecting them while tending to the associated psychological, social and spiritual problems. While palliative care can be given at any time during the course of the disease simultaneously with the treatment, Hospice is the care given to the patient when the disease is rendered incurable.

Palliative care, like several other branches of the medical field, is always advancing. The different parts of the world are at different levels in regards to palliative care. At least 40 million people need palliative care each year, but only around half that number receives it, according to the Worldwide Hospice Palliative Care Alliance.

In India the advent of palliative care ages back to over three decades. India comes near the bottom of the global league in access to end-of-life care—ranked 67 out of 80 countries in 2015 with Kerala being an exception, which has just 3 percent of India’s population but provides two-thirds of the country’s palliative-care services.

Over 10 million people may require palliative care services in India every year, of whom over 1 million have cancer and over 7 million have other life-limiting conditions. Ease of access to opioid pain medications is an integral component of effective palliative care service. Dr. MR RajaGopal, the father of Indian Palliative Care, estimates that only 2% of Indians get adequate pain relief. The root of the problem is that Opioids – the cheapest and most effective painkillers – are too hard to get hold of in our country because they induce a sensation of euphoria and have addiction potential, thus could be abused. The so-called war on drugs, the world ha

s been waging for decades, is designed to address the risks of abuse and addiction of these and other drugs by restricting supply. The people in pain, who are denied these medications, face the repercussions of these restrictions. There is an on-going struggle to bring a change in the laws controlling the availability and usage of opioids for palliative pain relief.

There have been a lot of recent developments in India for providing end-of-life care. The National Cancer Institute in Badsa village, Jhajjar, Haryana will be opened in the third week of January ‘19. It will operate in the lines of the National Cancer Institute in the US and German Cancer Research Institute as a nodal center for indigenous research, promotive, preventive and curative aspects of care and human resource development. It will emphasize on providing pall

iative care in adjunct to research and treatment of the cancers predominant in India.

In other news, Medical Institutes from Yunnan, Southwest China, and Singapore have signed a memorandum of cooperation on a training program, to help improve palliative care in Yunnan. The program is expected to benefit about 36,000 people in the terminal stages of cancer, those suffering from chronic diseases, and those working in the medical field by 2021.

The Department for Digital, Culture, Media, and Sport (DCMS), United Kingdom, will allocate a share of £400,000 to

allow the Down’s syndrome Association to develop an app allowing patients to monitor their weight and exercise levels from their phones through the Digital Inclusion Innovation Fund. The fund will also allow the exploration of how new technology can help improve end of life and palliative care. The project aims to research and develop technology to allow users to report on their health on a daily basis; provide consultations in a convenient and cost-effective way via video to help patients with regular appointments; and support careers and families at risk of isolation and detrimental health and wellbeing impacts, while improving their digital skills.

The providers of palliative care play a major role in its success. The doctors, nurses and everyone else involved forming the roots of it. Especially in cases where the patient is unable to perform any tasks by themselves, for example, paralyzed or comatose patients. It’s a noble deed to be working for the betterment of the living conditions of terminally ill patients. While most of the encounters between the patient and care providers are fruitful, there have

been a few disasters. A woman said to have been in a vegetative state for 10 years at Hacienda health care facility in Phoenix, Arizona, reportedly gave birth recently, triggering a police investigation. The staff was unaware that she was pregnant until a nurse heard her moaning and saw that the baby’s head was starting to emerge.

What happens with the life of a person who isn’t able to communicate by any means? Preparing a few simple legal forms known as Advance Directives can help ensure that the wishes of such people are respected. An advanced directive is a legal document based on the principle of autonomy that expresses the desire of the patient in relation to different medical treatments when the patient is unable to make those decisions. The advanced directives are represen

ted in three formats: Living Will, Appointment of a Healthcare Proxy and Legal Status of Preferences. The uses of advanced directives have an impact not only on the patients and their families but also on the healthcare team. This is a model of health care based on patient’s preferences and is slowly becoming an integral part of end-of-life care.

At different rates, palliative care is a branch of medicine that is ever-growing, evolving and spreading its wings across the various facilities available for people living with morbid conditions. In short, it is a blessing that will help its recipients, lead a near-peaceful life for the remainder of their years by easing their pain and lifting their spirits.

References:

• https://www.theatlantic.com/health/archive/2017/02/india-palliative-care/517995/

• Courtesy of Camilla Perkins, Mosaic.
• https://www.bbc.com/news/world-asia-india-44152429
• https://www.moneycontrol.com/news/india/indias-largest-cancer-institute-in-haryanas-jhajjar-to-open-in-january-3323951.html
• http://www.xinhuanet.com/english/2019-01/08/c_137728753.htm
• http://digitalhealthage.com/app-for-downs-syndrome-patients-part-of-dcms-grant/
• https://indianexpress.com/article/world/woman-in-coma-for-decade-gives-birth-phoneix-police-probe-sexual-assault-5525258/
• https://www.ncbi.nlm.nih.gov/pubmed/24152977