Palliative Care – An introduction Dr Suresh Kumar Director Institute of Palliative Medicine Kerala, India

The Nature of Suffering and the of Medicine - Eric J. Cassell The Nature of Suffering and the Goals of Medicine - Eric J. Cassell The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians’ failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself. Suresh Addis 2009

Most people with chronic diseases live and die miserably “Over 30 million people suffer unnecessarily from severe pain and other symptoms each year. So much is known in the management of these symptoms, but unfortunately this knowledge is not benefiting most of those in need of it. In spite of all the effort over the last two decades, the great majority of individuals with incurable diseases that need care are not getting it” - Stjernsward J and Clark D:” Palliative Medicine-a Global Perspective” in Oxford Textbook of Palliative Medicine, 3rd Edition Eds. Doyle D, Hanks G et al Oxford University Press, Oxford.2004 Chapter21, 20 Suresh Addis 2009

Symptoms at the End of Life: Pain67% Trouble breathing49% Nausea and vomiting27% Sleeplessness36% Confusion38% Depression36% Loss of appetite38% Constipation32% Bedsores14% Incontinence33% Seale and Cartwright, 1994 Suresh Addis 2009

Palliative Care “The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and families.” (WHO, 1990) Suresh Addis 2009

Goals of care ► What are the potential goals of medical intervention? Suresh Addis 2009

Potential Goals of Care ► Cure of disease ► Avoidance of premature death ► Maintenance or improvement in function ► Prolong life ► Relief of suffering ► Quality of life ► Staying in control ► A good death ► Support for families and loved ones Suresh Addis 2009

Historically, a dichotomous division of goals of care ► Focus on curing illness ► Little attention to relief of suffering, care of dying ► Palliative care arose in response to this need Suresh Addis 2009

Multiple goals of care ► Multiple goals often apply simultaneously ► Goals are often contradictory ► Certain goals may take priority over others Suresh Addis 2009

Goals May Change when the disease becomes incurable ► Some goals may take priority over others ► The shift in the focus of care  is gradual  is an expected part of the continuum of medical care ► Review goals with any change in  health/functional status (e.g. advancing illness)  setting of care  treatment preferences Suresh Addis 2009

Prognosis Can Be Difficult to Predict Chronic Progressive Illness Actively Dying Suresh Addis 2009

Sudden death, unexpected cause ► < 10%, MI, accident, etc Death Time Health Status Suresh Addis 2009

Protracted life-threatening illness ► > 90%  predictable steady decline with a relatively short “terminal” phase ► cancer  slow decline punctuated by periodic crises ► CHF, emphysema, Alzheimer’s-type dementia Suresh Addis 2009

Steady decline, short terminal phase Suresh Addis 2009

Slow decline, periodic crises, sudden death Suresh Addis 2009

Palliative Care Interdisciplinary care that aims to relieve suffering and improve quality of life for patients with advanced illness and their families. It is offered simultaneously with all other appropriate medical treatment. Suresh Addis 2009

Palliative Care ► Relief from symptoms ► Emotional support ► Social support The approach and skills relevant in the management of all diseases, curable or incurable Suresh Addis 2009

What Do Patients with Serious Illnesses Want? Pain and symptom control Pain and symptom control Avoid inappropriate prolongation of the dying process Avoid inappropriate prolongation of the dying process Achieve a sense of control Achieve a sense of control Relieve burdens on family Relieve burdens on family Strengthen relationships with loved ones Strengthen relationships with loved ones Singer et al. JAMA 1999;281(2): Suresh Addis 2009

What Do Family Caregivers Want? Study of 475 family members 1-2 years after bereavement Loved one’s wishes honored Loved one’s wishes honored Inclusion in decision processes Inclusion in decision processes Support/assistance at home Support/assistance at home Practical help (transportation, medicines, equipment) Practical help (transportation, medicines, equipment) Personal care needs (bathing, feeding, toileting) Personal care needs (bathing, feeding, toileting) Honest information Honest information 24/7 access 24/7 access To be listened to To be listened to Privacy Privacy To be remembered and contacted after the death To be remembered and contacted after the death Tolle et al. Oregon report card Suresh Addis 2009

Palliative Care... ► Focuses on relieving suffering, improving quality of life  affirms life, sees death as a personal and natural process  many diagnoses  appropriate early in course of illness  patient and family preferences respected  may be combined with curative therapies or may be the focus of care Suresh Addis 2009

...Palliative Care ► Interdisciplinary care of the patient and family ► Pain and symptom management ► May include disease-modifying treatments ► Psychological, social, spiritual support ► Bereavement support Suresh Addis 2009

Benefits of Palliative Care: The Evidence Base Reduction in symptom burden Reduction in symptom burden Improved patient and family satisfaction Improved patient and family satisfaction Reduced costs Reduced costs Suresh Addis 2009

Global need for Palliative Care All figures in million ► Annual Deaths globally: 58 Developing countries 45 Developed countries 13 Projected rise:-in in ► Cancer burden- new cases/year- in in in ► Elderly aged 60 and above in in in ► AIDS -mortality projections- in in in Suresh Addis 2009

Communicable and non communicable Diseases Communicable and non communicable Diseases ► What will be the common diseases of the twenty- first century? As a group, the non-communicable diseases (cancer, cardiovascular, diabetes) will increase from 27 to 43 per cent of the global burden of diseases by 2020, while communicable diseases (infections and tropical and parasitic diseases) will decrease from 50 to 22 per cent. Sepúlveda, C., Marlin, A., Yoshida, T., and Ullrich, A. (2002). Palliative care: the World Health Organization’s global perspective. Journal of Pain and Symptom Management 24 (2), 91–6. Suresh Addis 2009

Non Communicable Diseases in resource poor countries ► Only 20% of chronic disease deaths occur in high income countries ► 80% occur in low and middle income countries ► The age-specific death rates from non- communicable diseases are higher in developing than developed countries. (Preventing chronic diseases : a vital investment : WHO global report. World Health Organization; Geneva 2005) Suresh Addis 2009

Cancer Care (National Cancer Control Programs: Policies and Managerial Guidelines. World Health Organization) Primary PreventionEarly DetectionCurative TreatmentPalliative Care Lung++-- Stomach+--++ Colorectal+++++ Breast-++ Cervix++ Mouth/pharynx++ Esophagus---++ Liver++-- Suresh Addis 2009

► Roughly 80-90% of pain due to cancer can be relieved relatively simply with oral analgesics and adjuvant drugs in accordance with the World Health Organisation's guidelines. The remaining % can be difficult to treat. Suresh Addis 2009

Meaningful Palliative Care  “Meaningful palliative care requires a combination of socio-economic, cultural, and medical solutions. All three must be addressed. Not purely a medical issue, the cultural and socioeconomic factors determine what kind of death we face. Today’s overemphasis on medical approaches can be balanced only by the people taking ownership” – Dr Jan Stjernsward Suresh Addis 2009

The challenge  The challenge before physicians anywhere in the world is to find a way to assure continuous and meaningful care to most of those who need it  How successful are we in meeting this challenge?

Suresh Addis 2009 A proposed system of care for chronically and incurably ill patients ► Specialists have a definite but small role ► Primary care physician in the periphery to be involved ► Massive involvement from the local community

Thank you!! Suresh Addis 2009