Adopting villages

According to the last Census in 2011, 72% of India's population live in villages. Thus, the main focus has to be directed at the villages in tandem with the urban areas.[7] Cancer centers have to take the lead in committing to adopt at least 10-15 villages in their vicinities for cancer education, awareness, and clinical check-ups. I have gone into villages in UP, Rajasthan, and Punjab, and this exercise costs nothing apart from travel costs. Cancer specialists/centers have an obligation to educate the public, the primary care physicians, and other specialties (ENT, dental, gynecology forum, chest physicians, nephrologists, etc.) so that appropriate early referrals and timely treatments are given to patients.

Unified guidelines and treatment protocols

Various professional bodies and some cancer centers have come up with guidelines for cancers, but it is important that all centers follow one set of guidelines. The Indian Council of Medical Research has done a wonderful job of coming up with site specific consensus statements for various cancers, and these can be easily implemented country wide. The diagnostic tests, treatment etc., have been categorized as essential or desirable/ideal-essential is the bare minimum requirement if a patient is being treated for cancer and should be offered to all patients undergoing treatment at the center; desirable/ideal are tests and treatments that may not be available at all centers but the centers should aspire to have them in near future.[8] More importantly, if the ideal/desirable is the treatment of choice and is unavailable at a particular site, the treating oncologists should be aware of centers with the ideal and are obliged to refer the patient there.

Preventive screening and diagnosis of common cancers should be part of the teaching curricula at the undergraduate level. Implementation of these guidelines will be a challenge but is doable if it is an incentive driven. An effort from the National cancer grid described in this issue by Pramesh et al. to do the same with simplified algorithms for diagnosis and treatment will make this easier to implement.[9]

Communication skills

For some cancers such as lung, gall bladder, and pancreatic cancer, a performance status of 2 or more indicates a survival of <6>

Patient power

Patient choice and control have to be at the core of cancer treatment pathway. The Royal College of Physicians has set up a patient-caregiver network to improve the healthcare delivery by supporting shared decision-making which takes into account not only the professional evidence but the patient's own preferences.[10] It is important to have patient participation in the decision-making.

Governance

Clinical governance both in the private and the public sector is the desperate need of the hour. This has five major components — education, risk management, clinical audit, evidence-based care and effectiveness, patient and caregiver involvement. This makes sure that there is a systematic approach to maintain and improve the quality of patient care as “accountability of the organization” is at the core of clinical governance.[18]

Multidisciplinary care

The main barriers to a multidisciplinary team (MDT) care in India are logistics, education, cultural issues, and financial. Most secondary care centers do not have the MDT quorum due to lack of trained personnel and lack of facilities like video-link to tertiary centers. The cultural history and microenvironment does not lend itself well to collaborative approach between various disciplines. The solution to this is to educate the professionals and the policy makers.

All newly diagnosed cancer patients must be discussed by an MDT or the tumor board. These meetings should include a medical oncologist, radiation oncologist, surgical oncologist, radiologist, pathologist, nurse, and palliative care physician (optional though desirable). The patient and family may also be involved when necessary. If such a quorum is not available at every center, these discussions could be done by video link with centers that do have access to all the disciplines of oncology. This should be mandatory for all cancer centers as it will ensure that patient care is evidence-based and unbiased.[19] These meetings will also help identify patients suitable for clinical research.

Service reconfiguration

Currently, in India, doctors from any discipline including surgery are able to give chemotherapy and cancer-targeted therapy without any legal hurdles. Surgical oncologists, radiation oncologist, and urologists routinely give hormone therapy and chemotherapy. This should only be done by trained medical oncologists in the best interest of the patients and the case for this is being made by the Indian Society of Medical and Pediatric Oncology. Till there are enough trained medical oncologists across the country, patients should be treated at specialist regional cancer centers.

Data show that high volume centers give best results for outcomes, with lower morbidity and mortality for all aspects of patients care especially complex surgeries, radiation therapy planning and highly complex chemotherapy protocols; this was the basis for the reconfiguration of services in the UK.[20] Site-specific cancer surgery can only be done in high-volume centers and may be impractical for India to implement at all levels but for complex surgeries, the patients will get optimal care only if they are referred early to a specialist center.[21]

Oncology clinical pharmacists

Chemotherapy is a very high-risk medication that needs to be handled with care. This will take time, but we have to encourage the concept of specialist pharmacists for admixing chemotherapy under laminar flow hoods specific to drug reconstitution.[22] This is not only for the safety of the person handling the medication but also reduces the microbiological contamination. In most hospitals, this is currently done by nurses who need to focus on administration and clinical aspects.

Oncology nursing

Trained clinical nurse specialists (CNS) provide high-quality and cost-effective care to cancer patients.[23] The original concept of nurse consultants in the UK has been successful in developing and maintaining quality practice and services. The role of the CNS should be integrated into the cancer centers manpower requirements to begin with and over a period of time, at least for high volume centers, this could evolve into site specific CNSs. This needs training and education of nurses who are currently already delivering the care for cancer patients.

End-of-life care

This needs to be optimized for cancer patients. “Do not resuscitate” orders in the notes of patients with advanced cancer who are terminally ill is legal in most western countries but is not yet legal in India. This needs a legislative effort. Resuscitation in these situations does not help patients; in most cases it prolongs their agony. It is possibly due to the heroic culture of “fighting till the end” and lack of awareness among us physicians. Given that most Indian patients spend out of their pocket, it is very important to discuss end-of-life care with patients and families so the limited resources can be used to optimum. As physicians, we have a moral and legal obligation to inform the patient about the futility of further treatment if that is the case. We also have data from the west that show that hospice and palliative care is less expensive than hospital care.[24]

Cost-effective care

The cost of cancer management is mainly on the initial diagnostic tests, cancer drugs and end-of-life care.[25] These costs are higher in India as majority of patients are diagnosed at advanced stages due to lack of adequate awareness and no coordinated screening strategy driven by the government. If the standard guidelines are followed, this would help in providing cost-effective care. A body like the UK National Institute of Clinical Excellence is needed in India which not only looks at the intervention or guidance but also if it is cost-effective. One can argue that this would not be in the best interest of the country as healthcare is not universally provided for Indian citizens. This can at least help us to optimize the use of certain drugs/interventions for some indications for e.g., patients with human epidermal growth factor-2 positive breast cancer can at least get 9 weeks of therapy as shown in the FINHER trial rather than 12 months as is the standard all across the developed world.[26] Controlling cost of drugs, compulsory licensing, royalty payment to innovator, and wiser use of the generic drugs will all help lower treatment costs.

Emphasis must be made to encourage governmental support to indigenization of diagnostic tests, expensive equipment (diagnostic and therapeutic) and perhaps through a public-private partnership.

Databases

In considering progress in dealing with cancers, it is usual for us to consider incidence, prevalence, mortality, and survival. It is data pertaining to the latter two that is sorely lacking from Indian cancer centers. It is important for each center to prospectively maintain databases for all patients so that key outcome measures are available to the policy makers.

Key outcome measures

As part of the service commitment, the following should be collated and published centrally on a periodic basis:

1. Stage at diagnosis.
2. Treatment offered: Chemotherapy, surgery, radiotherapy, palliation, and symptom control.
3. 30-day mortality post-surgery or radiation or chemotherapy.
4. Post-surgery morbidity for each cancer surgery.
5. Response rate to chemotherapy.
6. Acute and chronic toxicity post radiotherapy and chemotherapy.
7. Hospital acquired infection rate.
8. Cancer survival (1-year, 2-year…).
9. Adherence to guidelines.