Clinicians and patients often say that "not everyone wants the information". True, to a certain extent, but 1) those of us who do value information need to get it and 2) all patients need to be informed to give informed consent and manage their own care. This could be dealt with in a flexible way - different strokes for different folks. Each patient has to cope in the way they feel best but I think we should err towards knowledge, not ignorance.
One of our members was horrified when she saw heard about the radiation mask so researched it. When she found out what is was for, she was able to cope. Fear of the unknown is often a more overblown and more painful fear than a rational fear based on facts.
Tommy Donbavand said in his great book about head and neck cancer, "Tommy v Cancer", that he didn't want to know but was forced to face the information when required to fill in a form. You can't really avoid the facts! Eventually you or someone close to you has to put that medical term to your condition.
Some people in the Swallows book, Australian version, say that looking back, they wish they had asked more questions at the start.
A man a plan a canal Panama
This brings me back to treatment and survivorship plans which in my opinion would help patients become more resilient. I would have appreciated a dental plan so that I knew the state of my teeth before and after treatment and a rough idea of how I could maintain my teeth and gums afterwards - plus my entitlements under Oral Health.
Carers and whanau
Does it just have to be the patient who receives the information? Sometimes the traumatised patient doesn't want to hear the harsh truth but a carer needs to know what is going on.
A delicate negotiation
"It's a process that needs to be negotiated with patients according to their wishes. Also need to consider 'others' ie family & friends who may be involved. Ideally should be open to those who need to know for supporting patient." (These words are from a clinician.)
Why it is a good idea for staff
There have been studies! Some show that patients who are fully involved in and informed about their care will take better care of themselves, thus reducing hospital admissions.
Patients who are fully informed are less likely to choose expensive and perhaps unnecessary procedures. Knowledge can empower patients and as a side effect lead to a more efficient system.
Staff members from ORL in Auckland who set up the Auckland Support group had a superb idea. A social worker and speech language therapist set up monthly meetings over the road from the hospital and invited specialists to talk to the group about aspects of head and neck cancer. When they retired the group was ready for a change but what an enlightened idea it was to educate patients and survivors about the disease. As a support network we are carrying on the talks but want to reach out to head and neck people with a more general education plan.
We have a helpful source of patient information just across the Tasman in the Beyond Five team whose website supplies the sort of clear information about HNC that is reassuring because it strips cancer of its mystery and shows how tumours can arise and how they can be eradicated.
In conclusion: knowledge of cancer is painful to confront but when the time is right, it demystifies the cancer and actually removes some of the fear. A better delivery of information to patients would enable patients to make more informed choices. Trusting patients to know their own information would break down the medical hierarchy where patients have historically been disempowered.
This has turned out to be an "Opinonator" rather than an "Investigator". I would like to hear what others think.