Palliative care is a holistic approach to improve the quality of life of patients with incurable disease and their families through the prevention and relief of suffering by means of early identification and careful assessment and treatment of pain and other problems, physical, psychosocial and spiritual (WHO definition).


Palliative care should be an integral part of the comprehensive care and support for people living with HIV/AIDS (PLWHA) and cancer patients. Similar care should also be given to people suffering from debilitating diseases such as Alzheimer’s, Parkinson’s disease & others. It should be provided in the framework of a continuum of care from the time the incurable disease is diagnosed until the end of life. In order to ensure adequate population coverage it is also important that it be provided in health institutions as well as in home and community-based organizations (HCBOs).

Palliative Care in India
In view of increased incidence of cancer and explosion of HIV/AIDS cases in India, there is mounting need for palliative care. Exact amount of load for palliative care is difficult to assess because of underreporting and deficiencies in registration. Every year nearly more than one million new cases of cancer are detected & 80% of these are already in stage III or IV. Care at community level is need of the hour but is largely an unmet need in India.

Barriers to delivery of Palliative care

1. 80% of India is rural India. Life in villages is characterized by poor roads& rail transport, poverty, low indices of nutrition & health. Illiteracy & cultural attitudes are the biggest barriers for patient education and active patient physician communication.
2. Strict regulations exits for distribution of opioids in India. Prescriptions for oral morphine can be written only by a hospital that is licensed to dispense opioids. Oral morphine is not available in commercial pharmacies. It is paradoxical that India is one of the world’s largest producers of opium but still it is underutilizing the drug for pain therapy.
3. Lack of physician’s knowledge regarding opioid administration & it’s side effects. It is not being prescribed because of fear of respiratory depression & addiction.
4. Scarcity of Medical personnel including nurses & facilities in rural India. Number of palliative centers is very few in our country. The existing few are extremely inadequate to offer service to thousands of patients dying of advanced disease. There is gross inadequacy of trained health professionals (doctors, nurses, social workers) to deliver the palliative care services. This paradoxical because organizing palliative care facilities does not need heavy infrastructural, financial and logistic input.
   

Palliative Care Centers in India
National Cancer Control Programme has included Palliative care as one of the important component of care, but till now the focus was on curative treatment, prevention & control. The concept of palliative care is relatively new in India, having developed over past 15 years. There are twenty five regional cancer centers all over the country that receive support from NCCP. But not all the centers are providing pain relief & palliative care. Palliative care services are well-organised primarily in southern part of India, especially state of Kerala. The palliative care centre at Calicut, Kerala, is truly regional service, with satellite clinics in surrounding towns aiming to offer the coverage to half the cancer patients in the district. The involvement of lay people has greatly aided the expansion of these clinics; their work includes initial history taking, explanation of medication regimens, provision of emotional support, educational initiatives and account keeping. The Calicut centre has become a WHO demonstration project for South East Asia Regions as an example of high quality, flexible and low-cost palliative care delivery in the developing world and illustrating sound principles of cooperation between government & NGOs. Legislation is being enacted in Kerala state to simplify licensing procedures for buying, stocking and dispensing morphine. Calicut centre with satellite units seems a very appropriate centre for reaching the maximum number of people with minimum cost, but this is because Kerala is unusual in having high literacy rate & health indices in India.

Pain & Palliative Care Society (PPCS) has branches in 14 states of India viz Calicut, Kerala –IPM(Institute of Palliative Medicine), Assam, Andhra Pradesh, Karnatka, Madhya Pradesh, Maharashtra, new Delhi, Orissa, Tamil Nadu, Uttar Pradesh & West Bengal. Further details can be retrieved from www.PAINANDPALLIATIVECARESOCIETY.ORG

Many of the centers in India are established by NGOs e.g. “Satseva” Home based care for terminally - ill cancer patients; The Cancer Patients Aid Association (CPAA) was established in Pune and many others. International agencies especially WHO & Cancer Relief India (CRI) a UK charity founded in 1990 are actively involved in palliative services in India.

Hospice Care
The traditional Western model of a dedicated inpatient hospice has been adopted in certain area. The first was that of Shanti Avedna Ashram, opened in Mumbai in 1986 and now extending its branches in New Delhi & Goa. Initially these inpatient units suffered from low occupancy, because these were considered as ‘houses of death”. Over the years this misconception is gradually disappearing and occupancy has increased. After all it is the treating physician who has to introduce these services to the patient while the patient is in hospital. Such high cost units in developing nation have been debated as WHO is keen to see a wider coverage on a scale that is not feasible with stand alone hospices4. Advantages of inpatient care include care for the destitute and homeless, care for the marginalized groups (those with disfiguring & offensive wounds), and it also gives relief to the family. Hospice care may not add days to life but it adds life to days.

Domiciliary Services
Many domiciliary services have been developed because of geographic & economical problems and debilitating patients, examples being in Delhi, Bangalore & Calicut. By entering homes these services gain insight into the patient’s socio-economic circumstances and can provide educational input & bereavement support. This type of care is more costly than clinic based.

Combined Inpatient & Training Centre
With funding from pharmaceutical company a purpose built cancer palliative care & training centre has been opened in Pune, Maharashtra. During a short admission stay of 15 days, symptom control is established & family members are trained to care for the patient at home. The families are taught to change dressings, dispense drugs, keep pain charts, and provide massage and physiotherapy as well as personal nursing techniques.

Palliative Care Education Centers
The WHO Programme on Cancer Control has highlighted the key role of nurses, not only in providing care and support, but in educating, leading and treating. Effective pain control and nurse education are central elements of the WHO Cancer Priority Ladder. Nurses are the most numerous health care providers in almost every country. Yet, while nurses are often the primary caregivers, they do not enjoy the status or economic support to realize potential. In Calicut, India, the Global Cancer Concern Course in Palliative Care is offered every year in February. This is a one-week residential course for nurses and physicians conducted at the Pain and Palliative Care Clinic of the Medical College of Calicut in Kerala. The course administrator can be contacted for details (Email: pain@vsnl.com).

Other centres for training include Shanti Avedna Centre, Mumbai and The Cipla Cancer & Palliative Care Training Cancer Centre.

CRI & Cancer Relief Macmillan Fund in collaboration with WHO facilitated training of doctors and nurses in palliative care courses in UK during a 3 year Indo British project.

Further Scope
Every cancer centre should have its own policies & guidelines for delivering palliative care services. Networking with other hospitals and voluntary organizations is essential to identify the patients & decide how to best utilize the existing facilities.

The government is taking initiative to optimize the services of the regional cancer centers & there will be improved guidelines for setting up palliative care facility. There are plans to introduce palliative care & rehabilitation care in districts through District Cancer Control Program.

Suggested Reading

1. World Health Organization (2002c) National cancer control programmes: policies and managerial guidelines. 2nd edition. WHO, Geneva.
2. Basu P, Mandal R, GK Sushil. Palliative Care-An Integral Part Of Cancer Management. Indian J Gynaecol Oncol,2006;5(1),5-13
3. Seamark D, Ajithakumari K, RGN GB, etal. Palliative Care in India. J R Soc Med 2000, 93,292-296.
4. World Health Organization (2002d) Community Home-Based Care in Resource-limited settings. A framework for Action. WHO, Geneva.
   

Pain is highly prevalent in cancer population. Overall 30-50% of patients undergoing active anti-neoplastic therapy and 15-90% of those with advanced disease experience chronic pain severe enough to warrant therapy. Unfortunately pain associated with cancer is often undertreated. Although cancer pain or associated symptoms cannot always be eliminated, proper use of available therapies can effectively relieve pain for most patients. Management of pain extends beyond pain relief and encompasses the patient’s quality of life and ability to work productively, to enjoy recreation and to function normally in the family and society. Flexibility in approach and thorough discussions with the patients and their families encouraging them to be active in their management are critical (Table 1).

Table 1: Recommended clinical approach

• Ask about pain regularly • Assess pain systematically • Believe the patient and family in their reports of pain and what relieves it • Choose pain control options appropriate for the patient, family, and setting • Deliver interventions in a timely, logical, coordinated fashion • Empower patients and their families

Enable patients to control their course to the greatest extent possible.

A number of pain syndromes are associated with gynecological cancers.

Cancer pain syndromes

I	Pain associated with direct tumor involvement
	A	Invasion of bone
		1.	Base of skull
		2.	Vertebral body
		3.	Generalized bone pain
	B.	Invasion of nerves
		1.	Peripheral nerve syndromes
		2.	Painful polyneuropathy
		3.	Brachial, lumbar, sacral plexopathies
		4.	Leptomeningeal metastases
		5.	Epidural spinal cord compression
	C.	Invasion of viscera
	D.	Invasion of blood vessels
	E.	Invasion of mucous membranes
II	Pain associated with cancer therapy
	A.	Postoperative pain syndrome
		1.	Post-thoracotomy syndrome
		2.	Post-mastectomy syndrome
		3.	Post-radical neck dissection
		4.	Post-amputation syndromes
	B.	Postchemotherapy pain syndrome
		1.	Painful polyneuropathy
		2.	Aseptic necrosis of bone
		3.	Steroid pseudo-rheumatism
		4.	Mucositis
	C.	Post-irradiation pain syndromes
		1.	Radiation fibrosis of brachial or lumbosacral plexus
		2.	Radiation myelopathy
		3.	Radiation-induced peripheral nerve tumors
		4.	Mucositis
III	Pain indirectly related or unrelated to cancer
	A.	Myofascial pains
	B.	Post-herpetic neuralgia
	C.	Chronic headache syndromes.

Adequate clinical assessment of pain goes a long way in defining the appropriate therapeutic strategy for these patients. The principles to be followed are:

1. Believe the patient’s complaint of pain.
2. A careful history as regards to the site, quality, exacerbating and relieving factors, onset, associated symptoms and signs and response to previous and current analgesic therapies for pain should be taken.
3. Evaluation of the patient’s psychological state with respect to the level of anxiety and depression, personal and family history of alcohol or drug abuse.
4. Perform a careful medical and neurological examination.
5. Individualize the diagnostic modalities like CT, MRI, PET or bone scan. Clinical assessment of tumor markers like CEA, CA-125 can be used.

Acute pain in cancer patients is usually postoperative and can effectively be managed with analgesic therapy. The treatment of chronic pain is a far more challenging problem, particularly among those with advanced illness. Various approaches used for chronic pain management are:

• Primary therapies
  - Radiation therapy
  - Chemotherapy
  - Surgery
  - Antibiotics
• Primary analgesic therapies
  - Pharmacologic approaches
  - Interventional approaches: trigger point injections, neural blockade, implant therapies
  - Physiatric approaches: use of orthoses and prostheses, occupational therapy and physical therapy
  - Neurostimulatory approaches: TENS, PENS, brain stimulation, dorsal column stimulation
  - Complementary and alternative medicine approaches.
  

Drug therapy is the cornerstone of cancer pain as it is effective, inexpensive, works quickly with a low risk. Recommendations for pain therapy begin with the WHO analgesic ladder, a three step hierarchy for analgesic pain. Effective pain management requires expertise in the administration of three groups of analgesic medications: NSAIDs, opioid analgesics and adjuvant analgesics. Substitution of drugs within a category should be tried before switching the therapy. The simplest dosage and schedule as well as the least invasive pain management modality should be attempted first. Dosing should be on a regular schedule i.e. by the clock to maintain a level of drug that would help prevent the recurrence of pain.

Fig. 1: World Health Organization three-step analgesic ladder

Various classes of drugs used are shown in Table 2.

Non-opioid analgesics
• Inhibit activation of peripheral nociceptors include acetaminophen and NSAIDs
• Used orally
• Have a ceiling effect, no tolerance and physical dependence
• Main side effect – GI toxicity, nephrotoxic in patients with renal insufficiency
• First line approach but use needs to be individualized.

Table 2: Non-steroidal anti-inflammatory drugs



Opioid Analgesics
Expertise in the administration of opioid analgesics is the mainstay for cancer pain management.

• Includes two categories: pure agonists and agonist-antagonist
• Principles of therapy are:
  - Start with specific drug for a specific type of pain
  - Know the equi-analgesic dose of the drug and route of administration
  - Administer regularly (after initial titration) by the clock
  - Patient’s need decide the route of administration.

Routes of Administration
Various routes available for drug administration are oral, parentral, rectal, transdermal, PCA, and intraspinal. An assessment of patient’s response to several different oral opioids is usually advisable before abandoning the oral route in favour of parentral, neurosurgical or other invasive approaches. Intraspinal administration should be considered for the patient who develop intractable pain or intolerable side effects from other routes. This route is often efficacious in gynaecological tumors as these affect the pelvis making profound analgesia frequently possible without motor or sympathetic blockade.

Table 3: Opioid analgesics


Dosage: Morphine initially as 5-10 mg IM or 15-30 orally every 4 hours is the drug of choice. Dose of an opioid should be increased until acceptable analgesia is produced or intolerable or unmanageable side effects occur. The various side effects of opioids are constipation, nausea and neurological problems like confusion, somnolence. Other opioid analgesics which can be used are shown in Table 3.

Adjuvant Analgesics
The term adjuvant analgesic encompasses a diverse group of drugs that have primary indications other than pain but can be effective analgesic in specific circumstances such as in the treatment of neuropathic pain. These are valuable during all phases of pain management to enhance the analgesic efficacy, to treat concurrent symptoms and to provide independent analgesia. These include corticosteroids, anticonvulsants, antidepressants, neuroleptics, local analgesics, hydroxyzine and psychostimulants.

Conclusion
Pain is associated with high morbidity in patients with gynecological tumors. The clinician involved in the care of such patients have a challenging task to provide state of art management approaches for both acute and chronic pain. Fortunately, the most effective strategies for both acute and chronic pain, opioid based pharmacotherapy, is clearly within the purview of all practitioners.

Suggested Reading

• Portenoy RK, Vielhaber A, Lesage P. Management of pain. In Hoskins WJ, Prez CA (eds). Principles and Practice of Gynecologic Oncology, 4th ed. Lippincott Williams and Wilkins.
• Foley KM. Advances in cancer pain. Arch Neurol 1999; 56: 413.
• Cherny NI, Coyle N, Foley KM. Guideline in the case if the dyeing cancer patient. In: Cherney NI, Foley KM (eds). Pain and Palliative Care. WB Saunders, Philadelphia; 1996: 235-59.
• DiSaia P, Creasman W. Clinical Gynecologic Oncology, 7th ed. 2007.

 

Like a wounded bird... A fair lady, with a seraphic smile, stood in our noisy ward. Nestling twins in her womb, she was too careful as she walked. At first glance, i was caught in her uber serenity and calmness. She was very quiet, as she moved to occupy one half of the bed. She was probably soaked in love, was eagerly waiting to welcome. She’ll soon cuddle them, feed them; she’ll soon be a lovely mum! She was back to our ward, was surprised to find her, one morning; For the first time ever,she wore a gloom, she looked apprehensive." Questions floated in her moist eyes, i could see thousands of them. “Why even when my babies are out, i still have got this big lump?” Irksome samplings and scans, she faced with courage and patience. While i was shell shocked to hold a report of it being malignant! Ill-fated nursing mother for chemo now; in melanocholy, i got submerged. I felt so helpless, as she perched upon on that bed,like a wounded bird.. But my patient is a true braveheart, as she believes to rise and fly again! She wants to be home soon, she says smiling through her agony and pain.. Akanksha Tripathi Senior Resident, GTB