COMMUNICATING WITH CANCER PATIENTS & THEIR FAMILIES

Dr. Nalini Rao. MD Director (Admn),
Bangalore Institute of Oncology Bangalore.

As we progress into the 21 stcentury, Cancer continues to exert its domination on the world. On the one hand we are curing more patients but on the other hand the number of cancers is also increasing and more people are dying of this disease! Although Allopathic / Modern medicine is making a slow and steady impact on the conquest of cancer, it is obviously not enough. In an effort to improve outcomes, patients and care givers alike are increasingly turning to newer treatments to replace and/or supplement the existing therapies.

In this scenario where there is ~o much "Choice" , it is very important that we focus on what information patients and their families need to help them make educated choices in their treatment and also how best to deliver this information.

A substantial body of research supports the view that communication is an essential clinical skill and that the patient-physician interview is one of the most powerful tools available to physicians. The use of more sophisticated research designs and the development of audio, film and video technology has enhanced the credibility of communication research.

Why do patients need information?
There are hundreds of diseases around us but when we speak of "communication" or information needs" it is generally for cancer patients.

Why are cancer patients singled out?
I think the main reasons for this may be: The fear associated with this disease: there is a very real fear of pain, of joss of function & autonomy, of death & dying.

The unpredictability of the disease:
In spite of all the awareness about healthy lifestyles and check-ups for early detection of cancer, we know that cancer can affect anyone irrespective of their age, gender, socio-economic status, lifestyle and habits, etc.

It is a social disease, which affects, directly or indirectly, the entire family and even society and has a huge financial implication.
Why do physicians need to improve communication skills? Physicians do not bring out more than 54% of all patient complaints and 45% of patient concerns.In 50% of visits, patient and physician do not agree on the nature of the problem.

On average, physicians interrupt patients 18 seconds into the patient's description of the problem; and once interrupted, patients are unlikely to raise additional concerns.

Most malpractice suits are due to communication errors, not competency errors patients whose autonomy and means of expression are severely limited by the demands of time and a physician-directed, narrowly focused interviewing style are less satisfied and more likely to bring suit.

Patients' most common complaint is lack of information from their physicians.
.83% of people believe in patients' right to information.

What are the benefits of giving information?

For the patient:
There is an increased understanding of disease & participation in treatment
Increased compliance to treatment leading to improved outcomes
Enhanced self image and self esteem
Increased satisfaction for caregivers as well.

For the physician
Communication is a core clinical skill; it con improve patient satisfaction and health outcomes.
Communication can have a positive impact on physician satisfaction
Communication can enhance efficiency and save time. Communication skills can be learned and retained; while personality and personal style may give you a head start, everyol1e can improve.

What information do patients require?
The minimum information that patients get should include the following:

About the diagnosis: this should be explained in a clear and simple manner to the patient and his / her family, in a language and style that they can understand and accept.

About the treatment options: this should include information about all the options that are available and backed by scientific evidence, not just the treatment that the physician is recommending

About the prognosis: Numerous studies have shown that cancer patients, particularly with advanced disease, have unrealistic expectations. It is important that patients have realistic expectations that will help them make justifiable treatment choices and also to plan their lives.

About the treatment related sequelae and side effects: the various doctors involved must give patients adequate information about their respective specialities. The surgeon must explain about the surgery, pre & post-op care, prosthesis, rehabilitation etc. The radiation oncologist must give details about radiotherapy including the dos & don'ts during treatment; he/she must dispel all the fears & apprehensions that the patient might have. Similarly the medical oncologist should explain clearly about the chemotherapy and its side effects etc.

About the effects of the disease and treatment on family: doctors must use this opportunity to dispel myths about the disease being contagious infectious; education must also be imparted on genetic/ familial cancers and most importantly on preventive oncology e.g. cessation of tobacco, consumption of alcohol, use of HRT and oral contraceptives etc

About the availability of support systems: cancer& its treatment can have a severe affect on the psyche of the patient. A lot can be done to allay this patients should be told about the existence of services to meet their physical needs e.g. ostomy association, wigs, prosthesis etc; services to meet their psychosocial needs like psychiatrists, support groups etc, services to meet their spiritual/ religious needs like priests, meditation groups etc and very importantly philanthropic organizations to help them financially.

About the availability of Complementary and Alternative systems of medicine: although many allopathic doctors shy away from discussing this issue, it is important to realize that in the welfare of patients, all practitioners- allopathic, ayurvedic, honieopathic etc must be open to discussing the pros & cons of the different systems with the patient.
Complementary medicine is used together with conventional medicine. Other complementary therapies include Massage, Qi gong, Reiki, Therapeutic Touch etc
Alternative medicine is used in place of conventional medicine. Examples of alternative medicine include Ayurveda, Chiropractic, Dietary supplements, Homeopathic medicine, Naturopathic medicine etc

integrative medicine which combines mainstream medical therapies and Complementary & Alternative Medicine for which there is some high-quality scientific evidence of safety and effectiveness! is most likely to be the treatment of the future.

About any other issues that the patient/ family wants to discuss eg. Media information or Internet information.

Handling a Relapse / Recurrence: This requires special skills from all the caregivers. It is extremely traumatic for patients & caregivers; information must be given regarding salvage therapies that may be available with special emphasis on cost, side effects & out came. Participation in clinical trials may be suggested.

Summary: It has been clearly established by well conducted research that in order to improve treatment compliance and outcomes, including improved Quality of Life, among cancer patients it is essential to give adequate information to the patient and family. All the information given should be backed by scientific evidence and be what is currently considered standard care and should adequately address all legal & ethical issues.

Since the cure rates with Modern medicine have apparently plateaued, there is a major resurgence in interest in the various Complementary & Alternative systems of medicine. It is very likely that this century will see the emergence of a new system of medicine -Integrative Medicine, which will combine the best of Modern medicine and Complementary & Alternative medicine in a scientific, well researched manner and the ultimate beneficiary will be our patients!

Cancer is so limited It cannot cripple love It cannot shatter hope It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit