By Ms Usha Shinde.
“There is a limit to cure, But there is no limit to care”
This is the philosophy of Hospice.
What is a hospice?
“A place where the terminally ill patients are kept for symptom control and pain management.”
But the answer is not complete yet. Hospice is a place where terminally ill patients are kept very comfortable till the end not by only medical care but psychological, emotional and spiritual care. It is a holistic approach towards the patient, whose end is inevitable.
Their days may be numbered, but the quality of remaining life is extremely important in hospice philosophy. The hospice does not take care of the patient only, but takes care of the people who matter to the patient.
Death is a word which makes uncomfortable to many. The unfortunates whose time is limited irrespective of age, feel helpless, worthless and hopeless. Most of the hospitals are reluctant to give admissions to such a patients as they can not afford to keep the beds occupied for indefinite time. Because terminality is also unpredictable. A patient who is gasping now, will be walking next day where as a patient who was playing a chess yesterday is no more today!
Home is the best place which provides warmest and unconditional care by family members. It is the most respected informal institution in the world. But now a days joint family system is breaking, industrialization, urbanization has brought drastic changes in mindsets of people. Families are becoming smaller and smaller, more and more women are working, more and more children are studying and working abroad. “Personal space”, “privacy” concepts have become strong. In such a situation where should a terminal patient go? Hospitals are reluctant to keep such a patient. The solution is either “Home Care” for such patients by the palliative care trained staff of the hospice or admission at hospice. Because care giving is a very demanding job and the family members get “burn out” after some time. Ultimately hospice remains the last answer. Many have a social fear to keep their loved one at hospice. What will people say? Will society blame me for abandoning my loved one? I would like to inform that it is not mandatory to keep your loved one forever in the hospice. Hospice staff teaches many simple techniques of caring; Right from medication to Ryles tube management and from wound dressing to Catheter management. The hospice staff teach you how to prevent the bedsores, pressure sores, changing the position of patient, sponge bath constipation management etc. They empower the family members to handle the patient confidently at home. India’s first home care for dying patients started by Bangalore Hospice Trust in 1995. I had an opportunity to serve as a Manager and Counselor for home care till 2000. Home care is free of cost. WHO nurses Ms.Gilly Burn, Loren Page has trained me a lot.
Home care is popular service at Bangalore, Calicut, Kozhikode which is provided by authentic hospices. At Bangalore such a home care is provided by a hospice called “Karunashraya” a project of Bangalore Hospice Trust on old airport road.
It may sound to many that a hospice looks like western concept. It is not. If we go back to the history of Mauryas and specially King Ashoka’s times, there are many evidences of having such a hospices. The pilgrims who fell sick and were unable to continue further journey, were kept in such a places till their death or recovery. These places were called as “Punya Shalas”.These sick pilgrims were looked after so well that the others could continue their journey without any worry. The places which were for other travelers or pilgrims were called as “ Dharma Shalas.” Many temple carvings say that the Maurya dynasty was known for compassion towards sick people. Physicians ( Vaidyas) and Nurses ( Paricharikas) were appointed by them on salary. They were directly paid by king’s court. Ashoka’s many “Shilalekhas”. (rock edicts.) have mentioned about it.
In Europe, Hospice concept is seen from 11th century where the crusaders, wounded and sick people were kept and looked after. There is 800 years old hospice at Jerusalem which is called “Zawiya al Hindiya” which was started by a Sufi saint from Punjab. This place was for the sick and wounded people. The place is known as “ mini India.”
Hospice is not a hospital to do the aggressive treatment on terminally ill patients. There are no ventilators to prolong the life and suffering. A hospice offers the “end stage care” for the patient to keep him pain and distress free. A hospice offers all medication and therapies which do not add days to patients life, but add life to his remaining days. The objective is to maintain the dignity of a dying by keeping him free of any more suffering. The aim is to maintain the quality of life by palliation. When the patient is free from pain, the family is at peace.
“What is the quality of life?”
“Quality of life is what the patient says it is.” It is a delicate balance between the harsh side effects and the benefits of treatment.
Palliative care – WHO definition
Let us see the definition of World Health Organization about palliative care. “ Palliative care is the active, total care of a person whose condition is not responsive to curative treatment.” This is applicable to any end stage disease like Cancer, full blown AIDS, end stage renal failure etc. It requires total understanding of a patient and what matters to him. What is the philosophy of palliative care?
- Affirms life and regards dying as normal
- Focuses on quality of life
- The whole person approach
- Care encompasses to both the dying and those who matter to that person.
- Respects patient’s autonomy and choice
- Depends on empathy and good communication skills
There are specific requirements to offer palliative care-
- Specialist knowledge. There are special courses offered by Medical Colleges and affiliated Hospitals where apart from theories, hands on training is given. For example, Dr. R. Akhileswaran is the first Radiation Oncologist who was trained in Palliative Care at Wales –U.K. At present he is a Dean of HCA Hospice at Singapore.
- Skills and attitude
- Multidisciplinary teamwork
- Respect for patients and colleagues
Counseling –Lot of Counseling is involved in Palliative care. Most of the time the first task is “breaking the bad news” about terminality which requires lot of communication skills and empathy. Very few patients and their families immediately accept the verdict of terminality as their hope is always towards cure.
Many cling on a hope for a miracle.
Entire team has to work towards dealing with “denial “ and bring the patient and family to “acceptance “level. The journey is not easy as human mind is complex and complicated. Acceptance of terminality is not a surrendering to the fate, but accepting the facts and get ready to face the future challenges. In between patient and family might go through various emotional stages like anger, depression, bargaining etc. These emotional stages are described very beautifully and scientifically by Dr.Elizabeth Kubler Ross, an American psychiatrist in her “Death and Dying” book. But she also alerts that there is no order in these stages. A person who has accepted all the facts can go back to denial stage again. Counseling provides an opportunity to the patient and his family to fulfil the unfinished business and sort out important issues.
Handling terminally ill children is extremely demanding job.Mainly their parents require the support to come to the terms of reality. Children usually are fearless as they can not visualize their own end. Their brain can not think too much ahead. They live in present tense and for them pain free life and freedom matters. At hospice, children’s wards are full of activities like birthday celebrations, songs and dance, magic show, drawing and painting competition etc.
“Play therapy” is practiced in many hospices. In my experience and as per research, 40 minutes play per day has a therapeutic effect and compliance to treatment is better. At Bangalore there are social workers and volunteers who are expert in “Clownology”. They entertain the children at palliative wards at Kidwai Memorial Institute of Oncology to divert their attention and make them laugh. This is very commendable work and I was touched by the “Clowns” for their affection towards dying children.
Pain assessment, Analgesic ladder
To maintain the good quality of terminally ill, the pain and symptom control, WHO has following guidelines. Who follows pain assessment and practice “Analgesic” ladder.
- 70% of cancer patients have pain, of which 95% can be controlled.
- 80% of cancer patients have more than one pain
- Careful history is taken and pain is defined. Pain is defined as –“throbbing”, “excruciating”, “pounding” “splitting”, “dull”, “nagging”, “unbearable” etc. Many a times they measure the pain by a “ pain scale “ and decide the medication or therapy. WHO ladder diagram-
Principles of the ladder-
1. There is no ceiling for the drug to control the pain.
2. Take medication “ by the clock.”
3. Give appropriate dosages
4. Monitor response and reassess the pain
5. Oral route is preferable.
6. Explain the treatment to patient.
WHO guidelines go step by step from Non Steroid Analgesic Drug (NSAID) which are non opioids. Second step starts with mild opioids up to Morphine. Morphine is available in the form of tablets, liquid (Oral Morphine Solution), injections. Many a times Syringe pumps are used for the regular Morphine administration. Hospice has a license to store the narcotic drugs.
Many might think that hospice sounds like a dull, gloomy or a place of dying. On the contrary, it is always a serene, calm and pleasant place where life is celebrated! As per my experience and observation, most of the hospices abroad and India welcome compassionate volunteers to help in being with a patient, in administration, counseling, fund raising etc. Hospice is a place of sharing and caring.
Families who lose their loved one after long battle with the disease, go through unmanageable grief. Many a times guilt becomes prominent. At home care and hospice well trained counselors provide the bereavement support to the families by regular visits and telephonic communication. They listen to their concerns and empower them to cope up with loss. In western counties bereavement support is given up to two years. Documentation of every case is a must.
At hospice, patient has full freedom to opt for any other alternative therapy like Ayurveda, Homeopathy, Unani, Siddha etc. as long as it is not coming in the way of his welfare.. Aroma therapy, music therapy, Pet therapy, meditation, Yoga, Creative visualization, reflexology are also adopted as per choice of patient and family. Many a times palliative chemotherapy or palliative radiation is also given to reduce the size of a tumor which presses the nerves and tissues and causes pain. Patient can decide to go home also. Most of the hospices provide such a care free of cost. Hospices work on charitable principles. They are supported by donations and grants. To name a few hospices I would like to mention “Karunashraya” of Bangalore for terminally ill cancer patients, “Sneh Daan” and “Freedom Foundation” for AIDS patients. At Mumbai “ Shanti Avedana “ at Bandra is a place where every bed is facing the sea! Ambience brings peace for such a patients. They are manging the hospices at Delhi and Goa too. At Pune, “ Cipla Foundation Hospice” is doing a commendable work. At Mangalore “Snehasadan “ is a hospice for HIV/AIDS patients. Huge investments are done in building super specialty hospitals which is very commendable. At the same time geriatric care along with terminal care has to be paid attention. Health care industry needs to pay attention to this area. Because truly, hospice is a abode of compassion!
About the author:
Usha Shinde has worked as Public Relations Officer at Bangalore Institute of Oncology, as Chief Counsellor at Manipal University. etc.
At present she is working as Manager- Customer Relations at Bhagawan Mahaveer Jain Hospital.
Her qualifications are B.A. (Economics) ,M.A. (Literature) and a P.G.Diploma in Public Relations. She was trained in Counselling by” Viswas” and by WHO doctors and nurses.
Email: [email protected]