Enabling patients to live and die with dignity | Sunday Observer

Enabling patients to live and die with dignity

A workshop on National Strategic Framework for Palliative Care Development in Sri Lanka for 2018 – 2020, was conducted recently by the Ministry of Health in collaboration with World Health Organization (WHO) at Taj Samudra Hotel, Colombo.

Palliative care has been identified under the broad strategic direction of ‘promotion of equitable access to quality rehabilitation care’ at the Sri Lanka National Health Policy 2016-2025. It is mentioned that the main stream health system should provide Palliative Care to all patients who are in need of such care for them to live and die with dignity.

Palliative care has been identified at the Health Master Plan 2016 – 2025.Also palliative care is a prioritized activity of ‘National multi Sectoral ’Action Plan for the Prevention and Control of Non Communicable Diseases of 2016-2020.

The Sunday Observer spoke to General Physician, Ministry of Health , Dr Ramya Premaratne, a participant at the recent workshop, to get more insights into the subject.

Excerpts…

Q. You attended the National Strategic Framework for Palliative Care Development in Sri Lanka last week conducted by the Ministry of Health and the WHO. Tell us about the findings of this important workshop. To begin with, what exactly is Palliative Care?

A. Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illnesses, e.g. Cancer, Diabetes, Kidney Diseases, Heart Diseases, Liver Diseases, HIV (AIDS)….etc

Palliative care for children represents a special field in relation to adult palliative care. Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease, e.g. Malnutrition, Meningitis, Congenital Abnormalities (born with abnormalities), Heart Disease, etc

Q. What are the diseases that need palliative care in the global context?

A. Diseases among adults

  •  Cardio vascular diseases (Heart related) (38.5%)
  •  Cancer (34%)
  •  Chronic respiratory diseases (Lungs related) (10.3%)
  • Aids (5.7%)
  •  Diabetes (4.6%)
  •  Chronic Kidney diseases
  •  Chronic Liver diseases
  •  Dementia (Psychological condition)
  •  Chronic Neurological diseases
  • Congenital abnormalities
  •  Drug resistant Tuberculosis

Q. What about sick children? What kind of diseases in children warrant palliative care?

A. Diseases among Children needing palliative care according to global statistics , are as follows:

  •  Congenital abnormalities (25%)
  •  Neonatal conditions (14.6%)
  • Protein energy malnutrition (14.1%)
  • Meningitis (12.6%)
  • HIV/AIDS (10.2%)
  • Cardiovascular diseases (6.1%)
  • Endocrine (hormonal), blood and immune disorders (5.8%)
  • Cancer (5.6%)
  • Neurological disorders (2.3%)
  • Kidney disease (2.2%)
  • Cirrhosis of Liver (1.0%)

Q. As an official representing the Health Ministry, what are the Ministry’s commitments with regard to providing palliative care?

A. In 2014, the first ever global resolution on palliative care,{ WHA 67.19,} called upon WHO and Member States to improve access to palliative care as a core component of health systems, with an emphasis on primary health care and community/home-based care.

In the WHO Global Action Plan for the Prevention and Control of Non Communicable Diseases (NCDs) 2013-2020, palliative care is explicitly recognized as part of the comprehensive services required for the Non Communicable diseases. Governments acknowledged the need to improve access to palliative care in the Political Declaration of the High-Level Meeting of the UN General Assembly on the Prevention and Control of Non Communicable Diseases in 2011 and access to opioid pain medicines is one of the 25 indicators in the global monitoring framework for NCDs.

Q. What is the overall goal?

A. To promote quality of life, respect dignity and lifestyle and ensure a holistic support system to patients with life threatening illnesses and their families through evidence based, multi-disciplinary and cost effective approaches.

Q. Does the Health Ministry have a strategic plan in this context?

A. Palliative care has been identified under the broad strategic direction of ‘promotion of equitable access to quality rehabilitation care’ at the Sri Lanka National Health Policy 2016-2025. Under this plan, it is mentioned that the main stream health system should provide Palliative Care to all patients who are in need of such care for them to live and die with dignity.

Furthermore , palliative care is also a prioritized activity of ‘National multi Sectoral ’Action Plan for the Prevention & Control of Non Communicable Diseases of 2016-2020. So you can expect to see Palliative Care becoming increasingly the new approach in our mainstream hospital system, for the well being of especially, patients whose health has been severely undermined resulting in many of them leading a poor quality of life in their twilight years.

Q. Outline some of these that the Health Ministry strategies suggested.

A. They are as follows:

1. To include palliative care as an essential component of comprehensive health care.

2. Integrate palliative care services and ensure availability of essential drugs and technologies, at all levels of care, tertiary, secondary, primary and at community level.

3. Ensure availability of skilled multi-disciplinary human resources for delivery of palliative care services at institutional and at community level.

4. Ensure availability and adherence of protocol and guidelines in palliative care.

5. Build partnerships with government and non-government organizations for delivery of palliative care

6. Empower family members, care givers for the provision of palliative care.

7. Encourage research related to palliative care.

8. Ensure adequate financing and resource allocation for cost effective delivery of palliative care

9. Facilitate strengthening legislative framework for delivery of palliative care

10. Ensure availability of management information system to monitor palliative care services

Q. You mentioned that palliative care will increasingly be the approach for caring of end stage patients so that they can live their lives with dignity and die with dignity. Are there statistics regarding the number of patients who will require palliative care in the future?

A. Globally, it is estimated that palliative care is needed in 40-60% of all deaths. Financial and social protection systems need to take into account the human right to palliative care for poor and marginalized population groups. As mentioned earlier Palliative care is required for patients with a wide range of life-limiting health problems. The majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases , cancer ,chronic respiratory diseases , AIDS and diabetes . Patients with many other conditions may require palliative care, including kidney failure, chronic liver disease, rheumatoid arthritis, neurological disease, dementia, congenital anomalies and drug-resistant tuberculosis.

Q. Children?

A. Children may have a high incidence of congenital anomalies and genetic conditions and mortality (Death rate) is highest in the neonatal period (under 1 Year).

Each year an estimated 20 million people are in need of palliative care in the last year of their life, with many more requiring palliative care prior to the last year of their life. Of these, 78% live in low- and middle-income countries. For children, 98% of those needing palliative care live in low- and middle-income countries. It was estimated that only 14% of people need palliative care at the end of life.

Psychosocial support is another common need in palliative care. Patients with life-threatening or terminal illness and their caregivers go through great stress, and health professionals treating them need to be adequately trained or prepared to help them manage their stress. The health system and health facilities may need certain simple features to facilitate other end-of-life needs of a patient, such as spiritual needs, family support, legal support where needed, and a motivating physical environment.

Q. Are there medicines used in Palliative Care? If so what are they?

A. Palliative care medicines, including those for pain relief, are included in WHO’s list of essential medicines for adults and children. These lists include opioid and non-opioid medicines for pain relief, as well as medicines for the most common symptoms in palliative care.

Under international drug control conventions, countries have a dual obligation to ensure that controlled substances are accessible for medical purposes, at the same time as protecting their populations against dependence and misuse.

Pain is one of the most frequent and serious symptoms experienced by patients in need of palliative care. Opioid analgesics are essential for treating pain and other common distressing physical symptoms associated with many advanced progressive conditions. For example, 80% of patients with AIDS or cancer, and 67% of patients with cardiovascular disease or chronic obstructive pulmonary disease will experience moderate-to-severe pain at the end of their lives.

Q. Palliative Care is already available in some of our state hospitals such as the National Cancer Institute at Maharagama where discussions were held a few years ago, with the then Director, NCIM, and the procedures and logistics for the establishment and the operations of the Palliative Care Consultative & Palliative Care (PC) Clinic were finalized. The Shantha Sevana Hospice to where cancer patients are referred to is one of the activities carried out by the NCIM. Are there any other such services in the pipeline?

A. Yes

The concept of palliative care is new to Sri Lanka, with significant developments starting in 2013. This is true for the Northern Province. This province is one of 9 provinces in SL, and has 5 districts, including Vavuniya. The teaching hospital for the Northern Province is in Jaffna district, with a district general hospital in each of the other districts. Vavuniya District General Hospital is the second largest hospital in the province,

There was a meeting with Dr Suharsha Kanathigoda and both non-oncological and oncological cases are discussed. The team consists of OMF surgeon, oncologist, radiologist, pathologist, pediatrician, psychiatrist, anesthetist, ENT surgeon, physician, general surgeon. Each case is discussed in detail in front of the patient and family. Social issues are explored by the palliative care nurses and solutions brought. The patient is categorized as, home-based, hospital-based or end-of-life care. Home-based cases are being referred to palliative care collecting centre.,OMF unit, General Hospital, Vavuniya.

Q. In commemoration of the World Cancer Day which falls on February 4 every year, Cancer Care Association Sri Lanka (CCASL) expanded its Home Based Palliative Care Service (HBPCS), to treat Sri Lankan underprivileged cancer patients in the districts of Colombo and Anuradhapura. The objective of HBPCS is to treat palliative cancer patients in the comfort of their own home and among the loved ones. A team of volunteers comprising a medical doctor, a nurse and trained palliative care practitioners from CCASL visit the homes of cancer patients in need of palliative treatments, mostly in remote areas. They engage in activities such as pain management, treating cancer related wounds and bed sores, monitoring the vital signs of patients such as blood pressure, blood glucose level etc., administering relevant drugs (done by the medical practitioner accompanied by the team) and most importantly religious activities such as meditation, counselling etc., to uplift the spiritual wellbeing of the patient (which is of utmost importance, at the palliative care stage). What is the Ministry of Health‘s input to this program of Home Based Palliative care for underprivileged cancer patients?

A. The Health Ministry has already initiated the following interventions for Palliative Care services :

  • Establishment of Palliative Care Clinic Head and Neck (H&N oncology)
  • Forming the Palliative Care Data Collecting Centre and Referring Centre
  • Developing H&N oncological hospice, Cheddiculum Base Hospital, Vavuniya, Sri Lanka
  • Learning and study in the field of palliative care
  • Teaching doctors, medical students, nurses, nursing officers and allied health workers, through workshops In addition we have started to do small studies which include audits and research on Palliative Care.

Q. Any other on going recent activities?

  • Founding the regional association of palliative care for the northern province
  • Collaborative work with other institutions, professional bodies, agencies who are in the field of palliative care locally and internationally
  • Started to sensitize peoples’ hearts, through an awareness program for non-medical people (corporate sector)
  • Started home based palliative care services in northern province
  • Establishment and strengthening of the hospital based palliative care services
  • Promoting palliative care by directing and filming a documentary on palliative care
  • Launching the web profile for education, awareness, and teaching in palliative care

Q. Have you a message from the Health Ministry on Palliative Care to the public?

A. The services at primary care need to be linked with the patient’s General Physicians, local MOH office , local religious leaders, community based organisations and volunteers, according to the needs of the patient. This service should link up with the nearest primary care medical institutions and secondary care hospital for specified advanced care if needed. For all this we need the patient’s voluntary compliance since our end goal is to make the patient feel as comfortable as possible in familiar surroundings.

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