Palliative care - India Against Cancer

“Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.“

Palliative care seeks to enhance quality of life. It also positively influences the course of an illness and when applied early during the course of an illness may prolong life. It is active total care which works best in conjunction with other therapies such as chemotherapy or radiation therapy which often have distressing side-effects. Empathetic communication and psychosocial counseling are an integral part of it.

In summary, palliative care:

Provides relief from pain and other distressing symptoms;
Affirms life and regards dying as a normal process;
Neither to hastens nor postpones death;
Integrates the psychological and spiritual aspects of patient care;
Offers a support system to help patients live as actively as possible until death;
Offers a support system to help the family cope during the patients’ illness and in their own bereavement;
Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;

Source: http://www.who.int/cancer/palliative/definition/en/

Need of Palliative Care in Cancer Patients

Cancer is a life-threatening disease which is difficult to treat and cure. Patients with advanced cancers suffer a lot not just due to cancer progression but also because they may have poor health due to co-existing diseases, and side effects of cancer treatment, which are physical (often pain),psychosocial and emotional. In India there is the additional financial burden. These lead to poor quality of life and hence people affected by them need support to handle these issues. Palliative care helps overcome these problems.

Goals of Palliative Care

As palliative care is “total care” it requires a multi-disciplinary team to deliver it. This team usually consists of doctors, nurses, counselors, dieticians and social workers who work together to maintain the best possible quality of life of cancer patients.

Palliative care is supportive care and not an alternative to cancer therapy except when cancer treatments stop

Palliative care should ideally be given as an addition to cancer therapy. It should start from diagnosis and continue through treatment and follow-up, gradually taking over as treatments fail and the end of life approaches. Terminally ill cancer patients, with limited life expectancy are sometimes shifted to hospices where they can receive in-patient palliative care also referred to as hospice care. The point to note is that palliative care can be given in a hospital, a hospice, a nursing facility or at home provided there are health professionals trained to administer it. The near and dear ones also need reassurance and support both during the course of the illness and after the death of the patient. Consequently, palliative care also extends tobereavement care for those left behind who may find it difficult to cope with their loss.

Opting for palliative care does not mean giving up

The goal of palliative care is to ensure the best possible quality of life. The focus is on the patient and not on the disease. It helps the patient remain functional all through the illness and live on with maximum comfort and dignity and finally let go in peace.

Dimensions of Palliative Care

Physical health improvement: Common physical and health problems are pain, weakness, swelling, wounds, loss of sleep, fatigue, nutritional imbalance, loss of appetite, nausea, vomiting, difficult breathing, anxiety, depression and loss of sleep. These physical problems could be due to co-existing disease, advancing cancer, as result of side effects or the cancer treatment itself. Specific medication, rehabilitative support, proper counseling, breathing exercises are essentially required. Occasionally ventilator support, nutritional advices or supplementation and parental nutrition may be required as support. After judicious consultations and counseling, therapies like de-bulking surgeries, chemotherapy and radiotherapy are given to reduce the size of tumor, hence reducing the pressure symptoms, pain due to tumor size and other ancillary symptoms.Common physical problems experienced are pain, weakness, swelling, wounds, loss of sleep, fatigue, nutritional imbalance, loss of appetite, nausea, vomiting, difficult breathing, anxiety, depression and loss of sleep. These physical problems could be due to co-existing disease, advancing cancer, the result of side effects or because of the cancer treatment itself. Specific medications, rehabilitative support, proper counseling, breathing exercises are an essential prerequisite. If required, palliative chemotherapy and radiotherapy are given to reduce symptoms like pain caused due to tumor pressure. For pain progression, opioids like oral morphine are the drug of choice. They are given in combination with other drugs according to the WHO pain ladder.

Psychological Care: No only suffering due to disease but also fear of impending death leads to various psychological problems like anxiety and depression, causing disruption of the sensitive balance between the body and mind. Specific counseling and self-help techniques are suggested to tackle such issues, including peer-based support. In addition, specific drug therapies, for e.g., appropriate anxiolytic and ant-depressants and other medications may have a role to play.

Spiritual Care: This adds meaning to life as death approaches. Trained counselors help patients explore and express their feelings, meet their desires, finish pending tasks and sort out misunderstandings. It is the time to ask for forgiveness, forgive others, thank people and let them know how much they meant to you and say a final goodbye.

Caregiver/FamilyCare: Palliative care never loses sight of family members. It prepares them for all stages of the progression of their loved ones illness by providing a plan of care. They are encouraged to share their anxieties and fears with the team and after the death of the patient help is available in the form of bereavement counseling.

Home versus Hospital Based Palliative Care

Home is where a majority of cancer patients want to live out their remaining days : in a familiar setting with their loved ones around them. Hospitals are frightening and isolating places. Palliative care can be delivered at home by a team of doctors ,nurses, counselors, social workers and volunteers to take care of patients and their families.

Cancer Pain Management

Management of pain is a most important aspect of palliative care. WHO has recommended a three-step ladder for pain management. First step (for mild pain) is to use a non-opioid adjuvant, for e.g., paracetamol. The second step (for moderate pain) is to use a weak opioid like tramodol. The third step (for severe pain) strong opioids like oral morphine are used along with adjuvant co analgesics. Nerve blocks may be used in some cases.

Pain and Morphine

Opioids like oral morphine when used alone or in combination with other adjuvant coanalgesics can take care of almost 80% of pain. They are well tolerated but must be administered by trained doctors who are conversant with appropriate dosage, how to treat break through pain and also how to switch opioids say from an oral form taken by mouth to a patch on the skin. “Morphine causes respiratory depression” is a myth. Various studies across the world have amply established this. Rather, use of oral morphine actually improves quality of life even in the last stage.

Source: http://www.who.int/cancer/palliative/definition/en/

Availability of Morphine in India

Despite India being the largest producer of opium only about 1% of cancer patients requiring morphine are actually getting it. Most important hindrance was the Narcotic Drugs and Psychotropic Substances (NDPS) Act, 1985, which made it difficult to procure a license for procuring, storing and dispensing oral morphine. Consequently, most hospitals did not apply for a license. Now with the amendment of the NDPS Act in February 2014 and the Gazette Notification of 5th May 2015, it is hoped that cancer patients will have easy access to oral morphine for their pain. The definition of “Recognized Medical Institution” (RMI) has been extended to include NGOs with a proven record in the field of palliative care. The amendment rules and SOPs are being finalized at the Ministry level. There is big hope that these changes will enable registered medical agencies to procure morphine without any hassles.
Source: www.thehindu.can/todaypaper/tp….ndps-act/article 5718188.ece

The southern state of Kerala in India has shown remarkable progress in the area of palliative care in the last two decades. The self-sustaining community based network called “Neighborhood Network in Palliative Care, started in northern Kerala, has spread to other parts. This is due largely to local government and community initiatives which have made palliative care part of the National Health Mission (NHM) in Kerala and decentralized it to the panchayat level.

India is a diverse country in which one model cannot serve all. There are today a number of NGOs delivering palliative care in India. ‘Shanti Avedana Ashram’, was the first hospice in India started by Dr LJ D’Souza, a cancer surgeon. Since then other hospices like Karunashraya in Bengaluru and Jeevodaya in Chennai are blazing a trail. CanSupport, serves Delhi and the National Capital Region (NCR), and today runs the largest home-based palliative care programme in the country, looking after 2000 cancer patients at any one time. There are two WHO demonstration centres in Calicut and Thiruvananthapuram run by Centre for Community Based Palliative Care and Pallium India respectively. Cankids is an NGO that caters specifically to the palliative care needs of children. The Indian Association of Palliative Care (IAPC) was established in 1994 and has provided leadership to the palliative care movement in India. Thanks to it the NDPS Act was amended. It is hoped that its latest collaboration with the intensive care specialists will pressure the courts and the government of India to recognise the Living Will and thereby make end of life and death more humane and dignified for all Indian citizens.

Useful links

Hospitals and Experts for Palliative Care

Pallium India: Directory for palliative care services

Resources:

http://www.cancer.gov/cancertopics/factsheet/Support/palliative-care

http://palliumindia.org/resources/clinics/

http://www.cansupport.org