What you don't know can hurt

A life-threatening diagnosis, long, arduous treatment with sickening side effects and the risk of relapse. Add to that the maelstrom of emotions and worries about how you and your family will survive these experiences, and it's patently obvious that cancer patients need as much professional and personal support as they can get.

What they don't need is specialists who haven't the time to talk them through their fears, nursing staff who don't bother explaining procedures or indeed GPs who wash their hands of them once their chemotherapy and radiotherapy treatment plans are put in place.

The lot of the cancer patient is not an easy one and the medical profession has finally woken up to the fact that psychological support is a crucial aspect of the treatment. And central to this is a good doctor/patient relationship.

"In the past, the patient was frightened, comparatively uninformed and accepting of the advice given. The doctor traditionally made the decisions, and the advice was prescriptive and only informative to a certain extent," says Dr Michael Moriarty, consultant in radiotherapy at St Luke's Hospital, Dublin.

"Now, the patient is nearly always well-informed and wants to fully discuss problems and prospective management. The doctor/patient relationship is much more of a partnership. But, ultimately, I give a recommendation. I feel I would be letting the patient down to leave him or her to make the decision alone," he adds.

Dr Rachel Cullivan-Elliott, a psychiatrist at St Vincent's Hospital in Dublin with an interest in psycho-oncology, says: "Patients' expectations have been raised, and a lot of people get very frustrated if there are no mechanisms to deal with their difficulties. Doctor/patient relationships are - in a way - more difficult and more painful for both parties now, because in the past doctors took some of the emotional load off the patients, and there wasn't the same pressure on patients to be assertive and involved in their treatment."

Psycho-oncology, a relatively new element of cancer care in Ireland, has long been a part of the treatment of cancer patients in the US and Britain.

"Up to half of patients will have a major psychological issue at some point during their illness for which they would benefit from psychological intervention," says Dr Cullivan-Elliott.

Relaxation training before chemotherapy or radiotherapy treatments, or skills training for better time management, can relieve stress during treatment. Some patients also need counselling once treatment ends, so great is their fear of recurrence.

"When patients get a cancer diagnosis, they are looking at a long relationship with their oncologist and radiologist, and trust is a huge issue. Communication skills are taught to medical students now, and Reach for Recovery groups give talks to medical students. But some people argue that communication styles are still led from the top, and that it will take a while to affect change," says Dr Cullivan-Elliott.

Susan Campbell (37) was diagnosed with leukaemia when she was 16. "I was told everything at the time, even the fact that I'd never be able to have children following the bone marrow transplant. My mother was upset that the consultant told me everything but, without the bone marrow transplant, I would have died and not had children anyway." At 20, Campbell had a relapse which required further treatment; and after annual check-ups for five years, she got the all clear. Campbell is now a member of the Bone Marrow for Leukaemia Support Group.

"I still have to go back to deal with side effects of the treatment - such as cataracts as a result of radiation - but my blood is in perfect condition, I can cope with anything else." The need to empower patients so that they can equally partake in the "partnership" relationship with their doctors has been tackled in workshops held by cancer support groups.

"Patients can often have the view that their doctors are busy, and they come away dissatisfied that they didn't ask more questions. If you don't ask, you won't find out," says Cullivan-Elliott, who has led such workshops. Writing down and rehearsing questions before visits or bringing a friend or family member along are ways patients can empower themselves.

While cancer specialists are now much more likely to discuss treatment plans with patients, communication difficulties can and do arise when patients come armed with research reports downloaded from the Internet.

"Sometimes the knowledge isn't always critically analysed, and the sources can be doubtful," cautions Dr Moriarty. The time required to sift through such documentation is often not available, leaving the patient feeling let down, and the doctor feeling that his/her expertise is not trusted.

"Relatives in particular want to know what the prognosis is, and, at times, they assume we know more facts than we do, and they get upset that you are not being frank with them. Forecasting anything - the weather, the economy - is uncertain. Life is grey. I'm not a black and white person. In fact, I live in grey most of the time," says Dr Moriarty.

"For example, in the early stages of breast cancer, most patients will want to discuss whether they should have a mastectomy or breast-conserving surgery. They will have talked to friends and have references from the Cancer Society support groups. All this can be discussed.

"But when the patient is at the advanced stage of the disease and they want to try out a new drug they've heard about or an alternative or complementary therapy, it's not so easy. I believe patients have to be protected from false hope in such instances," says Dr Moriarty.

He also believes that patients should be cautious about taking advice from other patients whose condition is often not comparable to theirs. "One-to-one information from other patients can be damaging because it can change the patient's expectation of treatment. That's not to say that support groups aren't valuable, because there the information is structured, and there is the possibility for discussion."

In parts of the country where a multi-disciplinary team is in place, Dr Moriarty believes that patients have ample opportunity to discuss all aspects of their care. However, he stresses the importance of keeping the patient's GP updated. "The role of the primary care doctor is very important - increasingly so in the team approach where one must ask the question whether the patient has the chance to develop a real relationship with any member of the team [the surgeon, the medical oncologist, the radiation oncologist, etc]," he comments.

Patients' coping styles vary hugely, and doctors are now increasingly expected to incorporate a counselling role into their job. "We need to listen carefully to what patients are saying and fire a warning shot to find out exactly how much information someone wants at a certain time," says Dr Cullivan-Elliott.

The need for support of the patient's family is now increasingly recognised. Living through their own emotional turmoil, they have to juggle the demands of work and home-life combined with the stress of hospital visits. Regular family meetings in which close relatives are kept informed about treatment progress is one method of keeping communication channels between the medical staff and family members open.

Mistakes are still made. Poor communication exists and strained relationships are not uncommon, but an awareness is growing that empathy, not sympathy, is the key emotion required from the medical profession to help patients through what is probably the biggest crisis in their lives.

Daffodil Day, the Irish Cancer Society's annual fundraising day is on Friday. Tel: 1850-60 60 60 See also www.cancer.ie