Hope Alexander MPH

Posts Tagged ‘diagnosis’

Hope will be attending the following Clinical Senate meeting on 26 March 2010 in Perth, Western Australia.

Event: 26 March 2010 - Pre-Hospital Assessment - Avoiding the Revolving Door

For Debate

Vertebroplasty for painful acute osteoporotic vertebral fractures: recent Medical Journal of Australia editorial is not relevant to the patient group that we treat with vertebroplasty

William A Clark, Terrence H Diamond, H Patrick McNeil, Peter N Gonski, Glen P Schlaphoff and John C Rouse MJA 2010; 192 (6): 334-337(see link below)

Abstract

We use vertebroplasty for patients with the most severe pain caused by osteoporotic vertebral fractures less than 6 weeks old, and have observed dramatic pain relief in this acute setting.

A recent editorial in the Journal, written by the authors of two recent vertebroplasty trials, suggested that vertebroplasty is not an effective therapy for acute osteoporotic vertebral fractures.

The trials described in the editorial sampled a very different patient cohort to the one that we treat with vertebroplasty.

Our clinical experience and most of the published literature relating to the benefits of vertebroplasty are in striking contrast to the opinions presented in that editorial.

©The Medical Journal of Australia 2010 www.mja.com.au

Vertebroplasty for painful acute osteoporotic vertebral fractures: recent Medical Journal of Australia editorial is not relevant to the patient group that we treat with vertebroplasty
William A Clark, Terrence H Diamond, H Patrick McNeil, Peter N Gonski, Glen P Schlaphoff and John C Rouse.
Med J Aust 2010; 192 (6): 334-337.
http://www.mja.com.au/public/issues/192_06_150310/cla11439_fm.html

Invited editorial presents an accurate summary of the results of two randomised placebo-controlled trials of vertebroplasty
Rachelle Buchbinder, Richard H Osborne and David Kallmes.
Med J Aust 2010; 192 (6): 338-341.
http://www.mja.com.au/public/issues/192_06_150310/buc10020_fm.html

Hope is now a member of the board of the Genetic Support Council WA Inc.

The below article is a guest column written by Hope, that was published in the “Medical Forum WA”  magazine, Western Australia’s Independent Monthly for Health Professionals July, 2009 edition. Her article is on Page 10 and the orginal article can be accessed at http://www.medicalhub.com.au/component/option,com_docman/task,doc_download/gid,130/Itemid,228/

With the ageing population, what can the Australian health consumer expect in the way of primary health care, and by whom will it be delivered? One strategy to overcome the shortage of trained health professionals is to utilise the skills and strengths of nurse practitioners.

The article “On solutions to the shortage of doctors in Australia” states that:

• WHO estimates a current global shortage of 4.3 million health workers;

• Australia … compares unfavourably with other OECD countries in respect to doctor numbers;

• The overall shortage of doctors in Australia … is exaggerated by the disciplinary, cultural, and demographic misdistribution of the doctors relative to need and utility;

• Australia … is one of the most reliant of the OECD countries on foreign doctors; and

• An increase in spending on health promotion and disease prevention is essential.

“The majority of health professionals recognise that there is a gap in health service delivery in this country, and that nurse practitioners can contribute to filling that gap” (Cerasa, 2009).

Anecdotal evidence from patient X has a woman attending a GP surgery to have weekly dressings on her leg after day surgery. But can either of the two practice nurses reassure the patient that her wound is healing? No. Can the GP who sees the wound on an irregular basis? No, “It is OK.” What does that mean? So the patient returns to the surgeon to get a definite opinion. “Yes, the leg is healing, everything is proceeding as normal.”

If a consumer consulted a nurse practitioner specifically trained in wound care, the outcome would be much different. The skill and knowledge base would be there. Information would be given to the patient to best manage her condition: how often would dressings need to be done, for how long, and what the patient could do to resume her normal lifestyle. As a consumer, I have faith in the education and training of nurse practitioners. Many consumers have been let down by GPs who do not communicate, who do not share information and/or evidence, and who “do not want to treat old people” or “people with no money”.

As an older consumer with a chronic condition brought about by medical treatment for another condition, I would say “Yes, I am willing to consult a nurse practitioner” for routine checks and most ailments. Part of the nurse practitioner training is to differentiate between serious and minor complaints. I see their role as being similar to triage. Instead of referring a patient to a GP, it may be a referral to an exercise physiologist, a dietician, or a massage therapist.

GPs are trained in the medical model, but many consumers, particularly those with chronic conditions, and older ones, would prefer a non-drug treatment, along the lines of the New Zealand “Green prescription”. In addition, consumers find it difficult to access a GP who is willing to write an Enhanced Care Plan. Excuses given are “it takes too much time” and “we don’t get paid enough”. Consumers may well ask “But what about us?”

Hope Alexander

July 2009

© Copyright Hope Alexander

International Women’s Day Event – A Celebration – Free Workshop – All Welcome

“How to manage weight gain/body fat gain and/or sexuality difficulties after cancer treatment”

This interactive workshop session includes information and evidence on:

Weight gain and body fat gain after cancer treatment and sexuality difficulties after a cancer diagnosis.

Participating in this workshop will give hope and encouragement to women who experience these difficulties.

Women will be better able to manage and overcome some of the side effects associated with cancer treatments.

The workshop will be an information and awareness-raising event. Handouts will be available.

Date: Sunday 8 March 2009

Time: 12.30 – 1.30 pm

Place: Room A231, E Central TAFE, Royal Street, East Perth, Western Australia.

Facilitator: Hope Alexander (Masters Public Health),
Consultant & Health Educator, Former lecturer in New Opportunities for Women, TAFE.

This is an International Women’s Day event supported by the WA Office for Women’s Policy

Toward a more equal partnership between health consumer and health provider

The Joanna Briggs Institute Inaugural International Convention 28-30 November 2005, Adelaide, Australia.

Name of presenter:

Hope Alexander

Title of abstract:

Some insights into consumer participation in healthcare in relation to breast cancer, and the need for equal partnerships between the consumer and the health professional.

Purpose of paper:

The purpose of this paper is to offer insights into consumer participation in health care, specifically in the treatment of breast cancer, and to demonstrate the positive outcomes which can be achieved. This paper will also document the negative outcomes which arise when the consumer is denied the opportunity to participate in their own health care.

Summary of paper:

Cancer is a complex and multifactorial disease, especially in breast cancer, which is acknowledged as a separate condition in post-menopausal, to that in pre-menopausal women. The treatment and management of these two conditions can differ and so will the patient’s experience. This paper will offer insights into consumer participation in health care, specifically in relation to breast cancer. It will reflect the perception that many health consumers, or patients, are experts on their own condition and therefore would request health providers to respect this view, which is under-pinned by references from the literature.

Introduction:

This paper is based upon one woman’s personal experience of travelling along the journey of breast cancer from diagnosis to treatment, to recovery and rehabilitation. This period extended over three years.

As explained in a paper I wrote “All I had to learn about Chemotherapy but didn’t want to know” the journey was made more difficult and painful than it needed to be. When I had completed the six months of chemotherapy, I naively imagined that that was the end of my journey. Not so. It was merely the closing of one chapter.

This time the paper I wrote was called “Clearing the in-tray” a title given me by a very supportive friend, a consultant in her own field of medicine. She had encouraged me to manage my health condition in stages, to reduce the risk of becoming overwhelmed by it all. This was to be a very simple yet practical strategy.

I learned two important things in my journey – and these are the ones I am sharing with you today. The first one is the need for equal partnerships between the consumer and the health professional. One critique is that this is a subjective report, but how else can one measure or understand the lived experience? It is the human story, which is more likely to make a lasting impression as far as health information goes. It also demonstrates the need for the patient and their carers/family to receive relevant accurate information to enable them to better manage their own health and wellbeing in partnership with their treating health and allied health providers. The second need is for the relevant accurate information in language and format that the consumer can understand.

Literature search:

During my literature search I found several documents on how to achieve effective communication between consumer and health professionals. These will be discussed later.

I also found an extremely helpful article by Dr Jane Turner, a clinical psychiatrist in Queensland, who describes how life after cancer is a different kind of normal. I see it not necessarily being worse or better, but different. As Turner explains “People can expend on enormous amount of energy trying to be the person they were before they had cancer. This is a waste of energy because normal has changed for them.” (Cancer Council of Western Australia Inc. media release 19 August 2002, Dr Jane Turner Cancer Changes Normal Forever).

It was only when I read Turner’s article that a light was turned on for me. Now I understood why it had been impossible for me to go back to being the person I was pre-diagnosis. All the energy I had expanded had been to no avail, and what a tremendous feeling of relief to know I could focus on being the new person I could choose to be. I had changed forever, I had to re-invent myself.

As Turner so wisely informs us “For many a life-changing experience with cancer can also be a liberating experience. It allows them to reassess their lives and let go of the trivial stuff. Their resilience to life’s ups and downs can also improve”. (Cancer Council of Western Australia Inc. media release 19 August 2002, Dr Jane Turner Cancer Changes Normal Forever).

To return now to the documents on how to achieve clear effective communication it is pertinent to look at the one produced by Pfizer (2003). This document describes the “Clear Health Communication Initiative” which has arisen from the work of the Partnerships for Clear Health Communication in the United States.

This Initiative has identified that “literacy skills are the strongest prediction of health status in the United States.” Health literacy is defined by the Partnership as “the ability to read, understand and act on health information” (Pfizer 2003). These findings could well apply to Australia. As Dr David Baker, a member of the Partnership explains “Medical terms often come across to patients as if the doctor is speaking another language” (Pfizer 2003). As Baker so succinctly states:

Health information needs to be communicated to patients in plain language and in a way that is appropriate to patients’ individual background and culture. The Partnership for Clear Health Communication was formed to leverage the collective resources and expertise of its members to improve communication between patients and health care providers.

(Press release by Clear Health Communication Initiative, United States, 2003 Literacy skills are strongest predictor of health status in United States)

The Partnership has devised a way of furthering the cause of increased meaningful communication between patients and providers by:

1. Educating patients and providers
2. Developing and applying practical solutions to improve patient-provider communication
3. Conducting nationally coordinated research to further define the health literacy issue and evaluate solutions
4. Increasing support for health literacy policy and funding (Pfizer 2003).

Dr Sharon Allison-Ottey, a member of the Partnership explains why it is necessary to have the appropriate tools, because “Effective communication tools are particularly critical when people of different cultures, ethnic and racial backgrounds need to exchange information in a way that all parties can understand and respond” (Pfizer 2003). Allison-Ottey further explains that the first step will be “to help patients and providers communicate in a clear manner” (Pfizer 2003). One tool that can help this process is Ask Me 3.

Ask Me 3 (www.AskMe3.org) promotes three simple but essential questions patients can ask their providers in every health care interaction:

1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this?

The Partnership believes that there are many solutions that cost little or nothing, are easy to implement, and don’t take much time, but “can help to effectively organize and focus patient-provider interactions in a way that can ultimately save time for the provider, improve health outcomes, and even save lives.”

(Pfizer, Press release 2003, downloaded 29/10/05).

It can thus be seen that there are already adequate tools available to assist with clear health communication, and in my opinion these tools and guidelines could well be adopted internationally.

Main body:

When I attended the medical oncology clinic I could see the pain, the suffering, the silence. This is what struck me most, the deafening silence of those whose voice is no longer heard, of those whose voice has been silenced. The image stayed with me, is with me still. I was moved to do something. I am an educated person, a sensitive person. If I found the going tough how did my fellow patients experience their condition, their treatment?

I focused on two main issues. One was the perceived lack of information about breast cancer, both around diagnosis and treatment options (specifically medical oncology), and more importantly the often serious and debilitating side effects. I found the lack of information, and the perceived reluctance to even admit such side effects did occur, let alone discuss them with a consumer, to be quite abhorrent.

The following are examples of Best Practice and Worst Practice I encountered in my personal journey through breast cancer:

First I wish to state how well I was treated by the surgical team at the Sir Charles Gairdner Hospital in Perth, headed by Mr Richard Nauton-Morgan, formally from the UK. The surgeon explained the procedure he would use (R Modified Mastectomy plus axillary clearance), and why, which was to achieve the best outcome for me. I was treated with respect, given the information I needed, had my questions answered in plain English, and encouraged to make choices, for example to decline the pre-med injection, which I did. The surgical registrar told me “In medical school we were told to listen to our patients,” which he certainly did.

The above experience, plus the excellent care I received from all the staff on Ward G71, enabled me to make a speedy recovery from the surgery, performed on 28 October 2002, Australian Breast Cancer Day.

I expected the same high standard of care and professional behaviour from the medical oncologists at B8 Clinic at the same hospital. This was not my experience. The following are excerpts from a formal letter of complaint I wrote to the hospital on the 2 February 2003. To date none of these issues have been resolved to my satisfaction.

“To date, no oncologist has sat down with me and explained my prognosis with or without chemotherapy.

“To date, no oncologist has explained to me the chemotherapy drugs I am, and will be, given, the risks to me, the benefits to me, the side effects, both short and long-term and how to overcome them.

“I was given two documents (patient information sheets) one of ten pages and one of eleven pages in length, by the BSIRG 005 and 006 Clinical Trials Co-ordinator, who I understand is not medically trained. No oncologist discussed any of the information contained in these documents with me.

“Both the trial Co-ordinator and the oncology registrar put pressure on me to go on the trial. The Co-ordinator told me I “had cancer cells in my blood” during a telephone conversation. I asked her “Where is the evidence?” I telephoned her the next day and she denied saying this. The Co-ordinator also changed some of my outpatient appointments without my knowledge and consent. Her explanation was that I had to be on the trial by Christmas Eve.

“The oncologists abrogated their responsibility to me by getting the nurse to tell me that my hair would fall out within three weeks of starting chemotherapy. It was the nurse who handed me a sheet with the drugs and the side effects (not all) on it. The drugs that were to be administered to me were high-lighted.
“I had to ask the oncology registrar what drugs I would be on, how they would be administered, and over what time frame. He informed me that I would have a treatment every three weeks for six months. This was the 4 December, the day before I would start chemo.

“I was given no time to prepare myself mentally or physically for this, which came as a great shock. Why could the oncologists have not told me at an earlier clinic appointment that I would be having chemotherapy over six months? The surgeon gave me ten days to prepare myself, which allowed me to develop a positive attitude and maintain it.

“When I told the Head of the Department that the chemo drugs were causing me severe constipation he said “Just take what you usually take,” I told him that I don’t “usually take” anything. It was very difficult for me to make him take me seriously and prescribe something.

“On 17 January another consultant told me that I was “silly” not to go on the trial. When I told him that the drugs (I believe it was the steroids) were preventing me from sleeping he said “it won’t hurt you” and told me to “do my housework at night.”

During the process of chemotherapy, I became an expert on my condition. I appeared to have experienced every known (but not disclosed to patients) side effect of the various chemotherapy drugs, even the unusual side effects.

Some of the side effects can be quite unpleasant and debilitating. What made it harder to tolerate were statements in the Chemotherapy and You patient information booklet published by the Cancer Council of Western Australia. These included:

“Most anti-cancer drugs cause no discomfort – - -

“Chemotherapy has increased the survival of many cancer patients and has cured some cancers

“Contrary to popular ideas chemotherapy is not always highly toxic and some quite gentle forms are used.

In my experience (over six months) two of the above statements are untrue and grossly misleading. When I read these statements, on pages three and four, I felt that there was no point reading the rest of the booklet as it was neither factual nor helpful. Just as well, as I read later on page eighteen that “Feelings like depression and hopelessness are not uncommon at this time.” Fortunately the Chemotherapy and You booklet was revised in 2004 with consumer input.

My experience of chemotherapy can be expressed quite succinctly as “the loss of the healthy self.” Reading Dr Jane Turner’s article (2002) referred to earlier was a very important healing exercise. Later I discovered that there are three types of chemotherapy, only one of which may cure cancer. They are curative [usually associated with childhood leukemia], adjuvant, which I had [back-up after surgery], and palliative [keeping a patient comfortable].

Lorraine Cowley informs us that “Women receiving adjuvant chemotherapy for breast cancer over-estimate both their survival chances and the reduction in risk which this treatment offers (Ravdin et al 1998) perhaps because its benefits have been oversold.” Cowley, Journal of Advanced Nursing, Volume 31 (2). February 2000, 314-321

I was told that after I completed the chemo I must go on the “hormonal” treatment Tamoxifen. And what does Tamoxifen do? “It is thought that in some women – - – oestrogen is driving the cancer to grow. Tamoxifen blocks the effect of oestrogen on the cell – - – In most cases, the cancer stops growing, even though it does not kill the cancer cells – - – The most serious side effect is the slightly increased risk of cancer of the uterus (or endometrial carcinoma). (A Consumer’s Guide: Early Breast Cancer, from National Breast Cancer website www.nbcc.org.au, updated 19 February 1998).

By the time I was ready to start Tamoxifen I had sacked my other oncologists. My new oncologist has excellent communication skills and fully informed me of the possible side effects and implications of taking Tamoxifen over five years. I trusted his judgment and was quite happy to follow his directions about this medication. To me it is an equal partnership which places us both in a win win situation. This oncologist was able to reassure me thirteen months after ceasing chemo that I was now clear of cancer. Many oncologists ask the women to wait for five years before they will offer any reassurance.

During my research I discovered that the first chemotherapeutic drugs were developed during the 1940s and were a spin-off of the work carried out by the Nazis to develop methods of chemical warfare (Professor Jane Plant, 2000, p.47). Plant also informs us that “some tumours quickly develop resistance to chemotherapy drugs” (ibid). This could explain why many of the cancer patients I meet tell me “the chemo drugs didn’t work, now they are trying another one.” They are often having radiotherapy as well. How many people know that some of the drugs used in chemotherapy are thirty years old, as, I believe, is Tamoxifen

This is why I feel an equal partnership between the consumer and the health professional is paramount.

As reflected in my interview for the Joanna Briggs Institute publication PaceSetters (in November 2005) “Consumers know that doctors have a lot of scientific training, but it is about sitting down and telling us exactly what’s happening. What’s wrong with me, how do I get it fixed, what do I need to do, and letting us ask questions. The consumer needs to know that they can ask questions and they are not necessarily in the wrong. Even if we’re educated we need people to go through it slowly, in plain English”.

It is not a case of the consumer telling the doctor what to do or not do. What many consumers need and want (and I am mindful that some consumers, quite rightly so, want the doctors to make the decisions for them) is accurate information relevant to their particular individual case. They need to know the options they have, the choices, or lack of, in order to give informed consent to any such procedure as may be required, or suggested. Only in this manner can the consumer participate in their own health care and wellbeing. The decisions about treatment and so on come out of the partnership.

The doctor is advising, giving information and listening to the patient, asking questions, clarifying that the consumer (or carer) fully understands. Then the patient asks questions, seeks answers, has fears allayed. The decision becomes a product of the partnership, and both parties are in a win-win situation. My example of this is my new oncologist discussing the benefits and the side effects, and the minor risk of taking Tamoxifen over five years.

Conclusion:

In conclusion it can be seen that a lack of communication, or ineffective communication between consumer and health professionals can make a patient’s experience of breast cancer more difficult and painful than it need be. This leads to further difficulties to overcome.

Not only does the patient have to recover from surgery and chemotherapy, but she has also to learn to cope with, and manage a whole raft of new conditions. This is what is meant by the term “the loss of the healthy self”. A patient naively believes, because she is not told otherwise, that she will be able to resume her normal life soon after the treatment is finished. Not so. This is why I found it helpful, and therapeutic to record my observations at the time, so that I could capture the essence of these emotions. I knew that I would have to deal with these emotional responses at some time, in order to return to my optimum state of health and wellness.

Turner’s article was particularly helpful in achieving this. Therefore, imagine the shock and surprise when I discovered that Turner’s article (a press release), had been removed from the Cancer Council Western Australia’s website. The Manager of Education Services could offer no explanation. Here was a valuable tool for cancer patients, written in plain English, addressing a very important, perhaps the most important issue in cancer recovery and rehabilitation, being withdrawn from the very people who need it.

The Pfizer (2003) document, and their Ask Me 3 is also a very important tool in the journey through cancer. Again, it is addressing many of the issues patients face. There is an awareness that different patients need to have their health information in different formats and styles to cater for differences in culture, language, literacy levels and so on. One important point stressed is the awareness that even well educated patients will benefit from information delivered in a plain basic format.

What is most important to a woman being diagnosed and treated for breast cancer? To be treated with respect, and this includes both her mind and body. The surgeon said to me “You don’t have to be brave every day.” The anaesthetist fleetingly touched my shoulder as he started the general anaesthetic, saying “We will look after you”. A gentle word, a fleeting touch, enables a connection to be forged thus creating a healthy and equal partnership between the consumer and the health professionals.

Thank you very much.

Hope Alexander

November 2005

© Copyright Hope Alexander – All Rights Reserved

Clearing the in-tray

This paper is based upon one woman’s personal experience of travelling along the journey of breast cancer from diagnosis to treatment, to recovery and rehabilitation. This period extended over three years.

This wonderful metaphor was given me by the astute friend who described my recent health condition as a “health hiccup.” Navigating my way through the chemotherapy maze (or should that be haze?) became “clearing the in-tray.”

What helped me survive chemotherapy? First it was the amazing love and support of so many people – family, friends, students, colleagues and some nurses. One, my “NZ connection,” was always there for me, even posting me a “Rescue Bear”, from the NZ Helicopter Rescue Service, in case I “fell down a hole” and couldn’t crawl back up. I now have a splendid collection of teddy bears, crystals and gemstones, candles and so on.

Second, I drew upon my own inner strength, and intuition. We are all stronger than we know. My students said “If you want to cry, we will cry with you.” The surgeon said to me “Hope, you don’t have to be brave every day.” My way of dealing with the diagnosis of breast cancer was to tell everyone, including my colleagues at work. I felt that it was the ultimate test of trust. If I could not trust the people I work with, with this most important fact, what is life all about?

Third, I trusted my genetic inheritance (which does not include cancer, heart disease, diabetes or Alzheimer’s). My mother turned 100 years old in May 2003 and my goal is to be the next matriarch in my family. No, I did not tell my mother of my diagnosis, it was neither necessary nor kind. After all, sixteen months ago I was one of my GP’s healthiest patients, and I am well on the way to that position once more.

Fourth, I distracted myself from the unpleasantness of the chemo by reading books (often one fiction book a day), going to movies and plays, spending time with friends, attending seminars, having complementary therapies and continuing with my volunteer work. As well I took the advice of my mentor, Dr Lynne Hunt, Associate Dean (Teaching), at ECU, who advised me to enrol in the Qualitative Research unit of my Masters in Public Health degree. I was able to undertake valuable research into the literature on breast cancer and particularly, chemotherapy.

In my oral presentation to the class (the greater proportion of which were registered nurses), I was amazed to find that no one appeared to know much about chemotherapy, the three different uses of it, and the side effects. As well, the nurses were not familiar with the term “risk communication” which means doctors informing patients of the risks to them of drugs, procedures and so on. I now realize what Lynne Hunt meant when she said that my speaking out publicly about my experience with breast cancer was a public health exercise. It is also great therapy for me, but may be confronting to my audience.

Fifth, but certainly not least, was my decision to make a formal complaint about the practice and procedures in the medical oncology clinic at the public hospital I attended. Basically, it was a general lack of communication. Doctors simply were not talking to their patients, in my case, not even looking at, and definitely not listening to the patient. “Best practice” was certainly not being achieved.

This week I heard the good (or great) news. A Clinical Professor of Medical Oncology is being appointed, to facilitate change “from the top down.” I was greatly heartened by this, and especially to be told that patients need to write letters if they have concerns. I am a great believer in process, teaching as I do, Communication Skills and a Dealing with Conflict module at TAFE.

So after six months I have achieved my goal of having changes made in the Medical Oncology Clinic, changes which will greatly benefit patients, many of whom are very ill and extremely vulnerable. I used energy in a positive way, to facilitate change, instead of becoming angry, bitter or disillusioned. I would encourage all women to make formal written complaints, if they have concerns, particularly if they are about health providers, because there are people who will listen, and there are processes to follow.

It is at this point that I can say “My in-tray is cleared” and gently close the page on this chapter of my life.

Hope Alexander

June 2003

© Copyright Hope Alexander – All Rights Reserved