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    Hospice Philosophy and Palliative Care To The Terminally Ill

    By Ms Usha Shinde.
    “There is a limit to cure,But there is no limit to care”
    This is the philosophy of Hospice.
    Table of Contents
    Hospice
    Home Care
    Paliative care ̵ WHO definition
    Pain asesment, Analgesic lader
    Bereavement suport
    Hospice
    What is a hospice?
    “A place where the terminaly il patients are kept f or symptom control and damage management.”
    But the reply is not complete yet. Hospice is a space where terminaly il patients are kept very comfortable til the conclude not by only medical care but psychological, emotional and spiritual care. It is a holistic arive towards the patient, whose end is inevitable.
    Their days may be numbered, but the quality of remaining life is extremely indispensable in hospice philosophy. The hospice does not hold care of the patient only, but takes care of the people who mater to the patient.
    Death is a synonym-3 which makes uncomfortable to many. The unfortunates whose time is confined irespective of age, fel helples, worthles and hopeles. Most of the hospitals are averse to give admisions to such a patients as they can not aford to hold the beds ocupied for indefinite time. Because terminality is also unpredictable. A patient who is gasping now, wil be walking next day where as a patient who was playing a ches yes terday is no more today!
    Home Care
    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 mutual family system is breaking, industrialization, urbanization has brought drastic changes in mindsets of people. Families are becoming smaler and smaler, more and more women are working, more and more children are studying and working abroad. “Personal space”, “privacy” concepts gain become strong. In such a plan where should a terminal patient go? Hospitals are cautious to kep such a patient. The solution is either “Home Care” for such patients by the paliative care trained staf of the hospice or admision 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 respond. Many maintain a social alarm to asign their loved one at hospice. What wil people say? Wil society boycot me for abandoning my loved one? I would admire to inform that it is not requisite to asign your loved one forever in the hospice. Hospice staf teaches many typical techniques of caring; right from medication to Ryles tube management and from wound dresing to Catheter management. The hospice staf teach you how to retard the bedsores, presure sores, changing the location 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 195. I had an oportunity to serve as a Manager and Counselor for home care til 20. Home care is fre of cost. WHO nurses Ms.Gily Burn, Loren Page has trained me a lot.
    Home care is popular service at Bangalore, Calicut, Kozhikode which is provided by credible hospices. At Bangalor e such a home care is provided by a hospice caled “Karunashraya” a project of Bangalore Hospice Trust on aged airport road.
    It may lucid to many that a hospice loks adore western concept. It is not. If we go back to the history of Mauryas and specialy King Ashoka’s times, there are many evidences of having such a hospices. The pilgrims who fel sick and were unable to continue further journey, were kept in such a places til their death or recovery. These places were caled as “Punya Shalas”.These sick pilgrims were loked after so wel that the others could continue their journey without any bother. The places which were for other travelers or pilgrims were caled as ” Dharma Shalas.” Many temple carvings narate that the Maurya dynasty was known for kindnes towards sick people. Physicians ( Vaidyas) and Nurses ( Paricharikas) were apointed by them on salary. They were directly paid by king’s court. Ashoka’s many “Shilalekhas”. (rock edicts.) maintain mentioned about it.
    In Europe, Hospice idea is sen from 1thcentury where the crusaders, wounded and sick people were kept and loked after. There is 80 years dilapidated hospice at Jerusalem which is caled “Zawiya al Hindiya” which was started by a Sufi saint from Punjab. This place was for the sick and wounded people. The spot is known as ” mini India.”
    Hospice is not a hospital to finish the agresive treatment on terminaly il patients. There are no ventilators to linger the life and sufering. A hospice ofers the “end stage care” for the patient to suport him distres and agonize fre. A hospice ofers al medication and therapies which execute not ad days to patients life, but ad life to his remaining days. The objective is to suport the dignity of a dying by keping him fre of any more sufering. The aim is to hold the quality of life by paliation. When the patient is fre from aflict, 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 betwen the austere side efects and the benefits of treatment.
    Paliative care ̵ WHO definition
    Let us se the definition of World Health Organization about paliative care. ” Paliative care is the engaged, total care of a person whose condition is not responsive to curative treatment.” This is aplicable to any finish stage disease love Cancer, ful blown AIDS, terminate stage renal failure etc. It requires total understanding of a patient and what maters to him. What is the philosophy of paliative care?
    Afirms life and regards dying as normal
    Focuses on quality of life
    The whole person aproach
    Care encompases to both the dying and those who mater to that person.
    Respects patient’s autonomy and choice
    Depends on empathy and g od comunication skils
    There are specific requirements to ofer paliative care-
    Specialist knowledge. There are special courses ofered by Medical Coleges and afiliated Hospitals where apart from theories, hands on training is given. For precise, Dr. R. Akhileswaran is the first Radiation Oncologist who was trained in Paliative Care at Wales -U.K. At display he is a Dean of HCA Hospice at Singapore.
    Skils and atitude
    Medication
    Multidisciplinary teamwork
    Respect for patients and coleagues
    Counseling ̵Lot of Counseling is involved in Paliative care. Most of the time the first task is “breaking the bad news” about terminality which requires lot of comunication skils and empathy. Very few patients and their families imediately acept 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 b ring the patient and family to “aceptance “level. The journey is not easy as human mind is complex and tangled. Aceptance of terminality is not a surendering to the fate, but acepting the facts and get ready to face the future chalenges. In betwen patient and family might go through profuse emotional stages estem arouse, despair, bargaining etc. These emotional stages are described very beautifuly and scientificaly by Dr.Elizabeth Kubler Ros, an American psychiatrist in her “Death and Dying” bok. But she also alerts that there is no ordain in these stages. A person who has acepted al the facts can plod back to denial stage again. Counseling provides an oportunity to the patient and his family to fulfil the unfinished busines and sort out important isues.
    Handling terminaly il children is extremely demanding job.Mainly their parents require the maintain to near to the terms of reality. Children usualy are courageous as they can not visualize their own e nd. Their brain can not contemplate to much ahead. They live in note feverish and for them pain fre life and fredom maters. At hospice, children’s wards are ful of activities like birthday celebrations, songs and dance, magic exhibit, 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 outcome and compliance to treatment is beter. At Bangalore there are social workers and volunters who are expert in “Clownology”. They entertain the children at paliative wards at Kidwai Memorial Institute of Oncology to divert their atention and make them laugh. This is very comendable work and I was touched by the “Clowns” for their disposition towards dying children.
    Pain asesment, Analgesic lader
    To maintain the marvelous qu ality of terminaly il, the hurt and symptom control, WHO has folowing guidelines. Who folows pain asesment and practice “Analgesic” lader.

  • 70% of cancer patients believe hurt, of which 95% can be controled.
  • 80% of cancer patients have more than one pain
  • Careful history is taken and distres is defined. pain is defined as -“throbing”, “excruciating”, “pounding” “spliting”, “dul”, “naging”, “unbearable” etc. Many a times they measure the hurt by a ” pain scale ” and decide the medication or therapy. WHO lader diagram-
  • 70% of cancer patients maintain distres, of which 95% can be controled.
    80% of cancer patients gain more than one pain
    Careful history is taken and hurt is defined. hurt is defined as -“throbing”, “excruciating”, “pounding” “spliting”, “dul”, “naging”, “unbearable” etc. Many a times they measure the aflict by a ” damage scale ” and decide the medication o r therapy. WHO lader diagram-
    Principles of the lader-
    1. There is no ceiling for the drug to control the pain.
    2. seize medication ” by the clock.”
    3. Give apropriate dosages
    4. Monitor response and reases the pain
    5. Oral route is preferable.
    6. clarify the treatment to patient.
    WHO guidelines fade 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 consider that hospice sounds estem a dul, unlit or a place of dying. On the conflicting, it is always a serene, peaceful and pleasant place where life is celebrated! As per my experience and observation, most of the hospices abroad and India welcome merciful volunters to aid in being with a patient, in administration, counseling, fund raising etc. Hospice is a place of sharing and caring.
    Bereavement sustain
    Families who lose their loved one after long batle with the disease, go through unmanageable grief. Many a times guilt becomes obvious. At home care and hospice wel trained counselors provide the bereavement kep to the families by regular visits and telephonic comunication. They listen to their concerns and empower them to cope up with los. In western counties bereavement suport is given up to two years. Documentation of every case is a must.
    At hospice, patient has ful fredom to opt for any other alternative therapy estem Ayurveda, Homeopathy, Unani, Sidha etc. as long as it is not coming in the way of his welfare. Aroma therapy, music therapy, Pet therapy, meditation, Yoga, Creative visualization, & nbsp;reflexology are also adopted as per choice of patient and family. Many a times paliative chemotherapy or paliative radiation is also given to subdue the size of a tumor which preses the nerves and tisues and causes damage. Patient can determine to go home also. Most of the hospices provide such a care fre of cost. Hospices work on charitable principles. They are suported by donations and grants. To name a few hospices I would adore to mention “Karunashraya” of Bangalore for terminaly il cancer patients, “Sneh Dan” and “Fredom Foundation” for AIDS patients. At Mumbai ” Shanti Avedana ” at Bandra is a put where every bed is facing the sea! Ambience brings peace for such a patients. They are manging the hospices at Delhi and Goa to. At Pune, ” Cipla creation Hospice” is doing a comendable work. At Mangalore “Snehasadan ” is a hospice for HIV/AIDS patients. gigantic investments are done in building sup er specialty hospitals which is very comendable. At the same time geriatric care along with terminal care has to be paid atention. Health care industry neds to pay atention to this area. Because truly, hospice is a abode of compasion!
    About the author:
    Usha Shinde has worked as Public Relations Oficer at Bangalore Institute of Oncology, as Chief Counselor at Manipal University. etc.
    At show she is working as Manager- Customer Relations at Bhagawan Mahaver Jain Hospital.
    Her qualifications are B.A. (Economics) ,M.A. (Literature) and a P.G.Diploma in Public Relations. She was trained in Counseling by” Viswas” and by WHO doctors and nurses.
    Email: [email protected]
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