Why Is The Doctor Not Talking to Me When I Am Told I Am Dying?

I was asked by my 20 year old daughter to help out her friend from
high school whose mother was admitted to hospital last week and told
she had terminal cancer. My daughter was crying because this news
was only given to the family a week ago. They were told that the
mother’s cancer was Stage 4, and that the cancer had metastasized and
spread to other parts of the body from the primary site. The family
was in shock. The main issue was a complete lack of communication
between the doctor and the family. The daughter described the medical
team running back and forth with the doctor after having a short interaction
with her mother stating there was nothing to be done. That was the extent
of any dialogue. The hospital where these events occurred is Toronto East General Hospital
which is a community hospital fraught with a lot of good and bad press over the
years.

I arranged to meet the daughter in the lobby and discussed with
her the positive aspects of meeting with the representative of Patient
Services, Wayne, as a connection point between the family and doctor.
Wayne was an under utilized person who proved to be an asset at the hospital.
The daughter communicated her concerns regarding the lack of communication
and given her mother’s condition and the lack of treatment, they were considering
a second opinion at the Mayo Clinic in the US.

Everyone wants hope that a treatment can buy some time, not a full lifetime.
The family wanted to review other options, as they felt if they stayed trapped
in the slow moving Canadian system their mother’s time would run out.
Wayne was able to communicate to patient records to have them faxed to the Mayo
immediately instead of 3-4 week delay that patient records said was the norm. A
$300 fee that was waived, and Wayne arranged to have a family meeting with the
medical team to discuss treatment options. Even if palliative care was the only route,
the family still needed to be prepared for this and not medical decisions made unilaterally
just by the medical team. Preparation had to include legal arrangements,funerals
and wills made so that the family’s cultural norms were respected.

By no stretch of the imagination was the family wealthy or had endless
resources. They were hard working middle class Canadians who immigrated
from China as professionals. But they would use up their savings to
save the one they loved. The family realized that if they politely
waited without asking questions, their mother would be getting no
information about her diagnosis or treatment plan. Even if there is
only palliative care, this  remains as a final decision with the
family and the patient. Worst of all it was difficult for the family to speak up as
they feared the physician would drop their mother as a patient and their
options would remain in no man’s land.

It appears patients do not know their rights in Canada. Also, the erroneous
idea that healthcare is free, when it is actually paid for by our taxes,
makes people unwilling to ask questions or express any dissatisfaction. All
patients should feel totally comfortable about questioning their own care.
As a student nurse I questioned when patient treatment plans would
have in pencil “no code” meaning that the medical decision was to not
revive the patient. I wonder how much of that decision was made by the
patient?

In my view, Doctor Day, a day to appreciate doctors across Canada. should
be replaced with Patient’s Day, a day  when doctors would take special note
of the respect and kindness due to patients.

Communication is the key to better healthcare.

Ordinary People Do Get Cancer

It seems that cancer is a less frightening word even from 10 years ago as we are bombarded by photographs of survivors and massive fundraising initiatives.

Yet, when we hear of another person we know receiving a diagnosis of cancer, we feel a step closer to mortality. The face of those being diagnosed appear to be younger and younger and not an elderly person’s disease.

Lisa, 34 years of age is one such person living in the Ottawa area who was living a full life when she was diagnosed with neurofibromatosis. During a routine check up in her late teens she was informed was told she had neurofibromatosis but that it was benign and if they grew she would have them removed.

Fast forward to about two years ago when Lisa was experiencing difficulty eating as the tumours had grown so large, she was unable to swallow. After seeing specialists in Canada and the USA, she was informed there was nothing that could be done. In 2009 there was clinical trials at the Mayo Clinic and she was accepted with OHIP coverage, as there was no other treatment available in Canada. Then she was informed by OHIP they would not accept it as it was termed “experimental”. The cost was $50,000 and as an average citizen there was no extra cash. Lisa is a public servant working at the Canada Border Services Agency. Family, friends and community have supported Lisa with donations on her website and it is at the $33,455.81 mark.

There have various news articles, interviews all in hopes of supporting Lisa, but more importantly to make Canadians aware that this could be them. That our healthcare system is imperfect and has flaws.

As Canadians we feel we are lucky to have universal healthcare. But how accessible is it when as a productive member of society wants to get proper treatment to maintain independence and not be a drain on the system.

Lisa has appealed to OHIP and has spent precious time and money trying to get her point across. The sad fact is that the elected politicians do not get back to her, the ones we the taxpayers elect to be our voices. The MPP who represents her riding is Dalton McGuinty the Ontario Premier and he has not done anything. To make matters worse, the federal government decided to audit her to confirm she is using her money in the USA for treatment.

I have never meet Lisa but I am in contact with her family regarding her OHIP appeal. This is an exceptional Canadian family who have strong values and proud to be Canadians despite the government treatment. On June 22,2011 on Lisa’s blog she shares her struggles of experimenting with a new form of radiation, which caused extreme fatigue and she states she hopes to return to work. Lisa adds OHIP has denied her appeal after a year with no costs to be covered.
Although, Lisa got her hearing to be heard the process remains flawed especially when it drags the claimant through years of wasted time and money if they obtain legal advice. In the end, the taxpayers pay for this lengthy process and the claimant wastes precious time left in their lives.

The lesson here is that we as Canadian citizens need to be vocal regarding our healthcare, the accountability by our elected politicians and to rid of OHIP hearings because it wastes time, money and energy when you are lead down the garden path of an unfair judicial process.

Tell and Email Dalton McGuinty , Premier that patients have rights and should be heard not through OHIP hearings that drag on for years.

Moods Magazine Helping Spread Support for Mental Illness

Rebecca Difilippo, Publisher

Moods Magazine

When did you launched moods Magazine and what was the response at the
time and present?

Moods was launched Oct 1, 2003 and the response was extremely positive. Many people who found the magazine in their doctor’s office or at Chapters/Indigo called to inquire about subscribing.

Do you feel there appears to be more “acceptance of mental illness”?

I believe that with all the media coverage about mental health over the past 5 years or so, people are more aware of the mental illness and a little bit more knowledgeable. However, many people I speak with are still concerned about the stigma attached to mental illness.

Any insights on why?

Mental Illness has been a taboo topic for so many years as it is so misunderstood. Lack of knowledge is one of the greatest causes of fear (fear of anything) and there is still a huge fear about mental illness. Many people are misinformed, not only about what mental illness is, but also what the causes, symptoms and treatments are.

All too often, media sensationalizes horrific crimes involving mental illness and this emphasis often leads people to believe that all people with mental illness are violent and dangerous. This however is far from the truth. Most people living with mental illness are non violent and often live fairly normal lives.

Do you feel celebrities coming out of the closet has changed the face
of mental illness?

Yes, most definitely! When celebrities, people who are successful and extremely respected, speak out then, others listen and learn from their stories. 

What is your story and why are you passionate about the magazine.

About 15 years ago I knew nothing about depression. I thought the word depression simply meant that you were sad. I didn’t know it was an illness. I got depressed slowly over a seven year period after my husband had a fall leaving him with a serious head injury causing memory loss, a personality change, seizures, loss of hearing in one ear and leaving him legally blind. He had grand mal seizures, two heart attacks, a quadruple bypass, cancer (lymphoma), kidney failure and battled many other illnesses. He finally passed away in 2001, a time when I was also running a business with about 17 employees and taking care of our 12-year old daughter. Throughout this entire time I did not recognize the symptoms and behaviours of depression, so I did not seek help. When my husband passed away I crashed. I became so ill that I let my business go and I attended the hospital as an outpatient for almost 11 months. I filed for personal bankruptcy and experienced so many unnecessary losses. If only I had known what depression was, I could have sought help in the early stages. But I didn’t. So, in an effort to assist others through education and preventative measures, I founded Moods magazine.

It is noted on your site that in that 70% of people living with mental
illness are in the workforce.
Can you comment on whether there is enough being done in terms of
education and employer support to facilitate recovery and successful
rtw?

There is still much work to be done in the workplace regarding mental illness at work. Many workplaces are making great efforts to educate their management and staff about mental health and many are providing tools and resources to their staff. Many organizations are still without the knowledge they require to help prevent or deal with mental health conditions. Return-to-work programs should be discussed with an employees’s support team, which may consist of the individual’s doctor/specialist, therapist, spouse and HR representative or manager. It may be different for each situation. The more support and understanding there is, the better the chances of a successful return-to-work.

Do you feel employees need to disclose or be open about their condition?

I believe that if an employee has a good relationship with their manager or HR staff and their workplace supports mental illness, then disclosure can be very beneficial. An organization cannot assist if they are not aware of special needs. Some organizations are still not equipped to deal with mental health concerns. It depends a great deal on the organization, as well as the individual’s comfort level.

Do you feel that focusing on restrictions and limitations is the best
way to approach rtw?

I believe the focus should be on what can be accomplished; a person’s strengths and capabilities as opposed to their limitations — that one should always emphasize and work with the positive.

What are the most significant changes you have witnessed in mental health today?

Although there is still a great stigma attached to mental illness, more people than ever are aware of it to some degree even if they are not fully educated. More celebrities are speaking out about their experiences in an effort to bring hope to those in need. I think many more people are able to accept someone who has gone through mental illness, however there is still much work to be done.

What is the best advice you can give to someone who has mental illness?

Seek help! The sooner one is diagnosed, the sooner the recovery process can start. Early detection and treatment is the key to full recovery.

Speak to your family doctor and speak to family members and friends you can trust and who will be positive and supportive towards you. Be positive as much as you can and know that there will always be a better day. Never give up hope! If the treatment you are following does not work, try, try again. Every person’s makeup/chemistry is different and each illness is different. What works for one person will not necessarily work for another. Researchers have made great headway with medications and talk therapy. I strongly recommend a combination of both medication and talk therapy if one’s illness is severe. Sometimes talk therapy alone is all that is needed though. Sometimes removing triggers from one’s life, reducing stress and living a more healthier lifestyle is all it takes. Eating good nutritious food regularly each day and getting enough sleep is also very important. A combination of all of the above are important.

What is the best advice you can give to a relative or parent who is
struggling with a close relative who has been diagnosed?

Listen. Validate! Even if you don’t understand what your loved one is going through, they need to know that you are there to support them and want to help. Just listen and be there for them. Validate what they are struggling with and feeling even if you don’t understand!

What are the biggest challenges for mental illness in this decade?

I personally feel that our society today encourages a multi-tasking, busy, stressful lifestyle that is not very healthy. Too many people do not have time to share a happy and fulfilling life with family and friends because of the demands from work and impossible expectations of society in general — the unending connections to work and friends. We all need to simplify our lives a bit and recognize that fulfillment can be found in some of the more simple things.

We are also lacking enough professional support, especially talk therapists who are covered by government. We need more immediate support available to people before crisis sets in–especially with more and more people working and living longer. Prevention needs to be emphasized and programs implemented to assist people in the early stages.

Read Rebecca’s Story 2012

When Fat Became Passe and Eating Disorders Became The Norm

When did being ultra thin was considered the norm or even beautiful?
Fat was beautiful starting with early carved prehistoric Venus oozing soft folds of abdominal fat indicative of being able to bear future offspring to ensure the survival of mankind. Looking at paintings at the time of Rubens we have voluptuous women stuffed into their corsets overflowing with bounty.

How Thin Is Too Thin?

Twiggy in the 1960’s changed all of that when the London fashion scene exploded with Carnaby Street. She had an androgynous  features and was the rage and role model for young women. Thin was in.

Eating disorders began to gain notice defined as abnormal eating habits that involve insufficient nutrition or excessive food. There is no one reason for its development, although it is in the rise in numbers affecting mainly females noting 5-10 million in the USA alone and rising. There is increasing pressure by media including the fashion industry to blame and one study showed 40% of 9-10 year old girls are already on diets. This can also be learned or modeling behaviour by mothers or even friends. It is sad when a five year old states I can’t eat that because I am on a diet.

The result of this are the mixed messages especially in western society where there are enormous portions of food along side bombardments of media that thinness equals beauty. Eating disorders can start in adolescence but continue into old age even if treated. This has no age barrier. My reality check was I saw a grandmother looking for a garbage tin to throw up in after a meal. This illness needs monitoring and there is no cure.

Karen Carpenter the singer died at the age of 32 was the first to bring this illness to the media. She died due to damage from decades of anorexia nervosa, where extreme weight loss lead to medical complications including heart failure.  Later on, Diana, Princess of Wales admitted to her eating disorder. This was somehow comforting that it had no boundaries but then what was the next step.

In the past twenty years, as more celebrities came public with their eating disorders the public began to become more open and there was an increase in public awareness and treatment. Eating disorders set up in hospitals and clinics are specialized; units are set up to address needs of the patient. For example to normalize food meals are eaten together supervised with doors locked to bathroom to discourage self vomiting. Treatment encompasses the person including addressing body image, self-esteem, mood regulation, self-care, nutritional sessions, exercise moderation and sessions with psychologists and sociologists to address family dynamics, as no illness exists in isolation. Follow up is important as in any recovery that this be monitored for attendance, relapse and intervention.

Due to effects on family there have been a number of support groups open to assist in understanding and facilitating a supportive environment.

One of the most difficult decisions for anyone is first admitting they have an eating disorder and then seeking treatment. In Canada if treatment is not available in your area, your family physician maybe able to request out-of-province treatment at another facility.

In western society, women and men are dying to be thin and awareness is key with early intervention to save lives.

Here are a list of resources for across Canada.

http://www.canadadrugrehab.ca/Eating-Disorder-Treatment.html

Statistics on eating disorders:

• 40% of newly identified cases of anorexia are in girls 15 to 19 years old (Hoek and van Hoeken, 2003).
• 42% of 1st-3rd grade girls want to be thinner (Collins, 1991).
• 81% of 10 year olds are afraid of being fat (Mellin et al., 1991).
• The average American woman is 5’4″ tall and weighs 140 pounds. The average American model is 5’11″ tall and weighs 117 pounds.
• Most fashion models are thinner than 98% of American women (Smolak, 1996).
• Only 33% of people with anorexia and 6% of people with bulimia receive mental health care (Hoek and van Hoeken, 2003).
• 35% of “normal dieters” progress to pathological dieting. Of those, 20-25% progress to partial or full-syndrome eating disorders (Shisslak & Crago, 1995).
• Over 50% of teenage girls and nearly 33% of teenage boys use unhealthy weight control behaviors such as skipping meals, fasting, smoking cigarettes, vomiting, and taking laxatives (NeumarkSztainer, 2005).
• Girls who diet frequently are 12 times as likely to binge as girls who don’t diet (NeumarkSztainer, 2005).
• 25% of American men and 45% of American women are on a diet on any given day (Smolak, 1996).
• 51% of 9 and 10 year-old girls feel better about themselves if they are on a diet (Mellin et al., 1991).
• 46% of 9-11 year-olds are “sometimes” or “very often” on diets, and
• 82% of their families are “sometimes” or “very often” on diets (Gustafson-Larson & Terry, 1992).
• 91% of women recently surveyed on a college campus had attempted to control their weight through dieting, 22% dieted “often” or “always” (Kurth et al., 1995).
• Males who wrestle show a disproportionate increase in eating disorders with rates 7 to 10 times higher than normal.
• 95% of all dieters will regain their lost weight in 1-5 years (Grodstein, 1996).
• Americans spend over $40 billion on dieting and diet-related products each year (Smolak, 1996).

To Be Or Not To Be In The Canadian Healthcare System

Every day as I meet more people, and they either share their personal story or of someone they know who have difficulties in the healthcare system with a late diagnosis or a lack of timely access. I am truly amazed how this is becoming more common place. It seems Canadians are getting more sicker, while waiting on their healthcare.

Annie who is a smart business woman shared with me how she is a private patient of the Cleveland Clinic, Canada. The clinic made an early diagnosis of cancer during a routine physical and thus she was able to get treatment at Stage 1. The Cleveland Clinic prides itself as part of their mission statement as being focused on preventing disease and enhancing overall health. Prevention being the key and patient empowerment.

The Executive Health Program with 5 hr assessment , use of urgent care for 12 months
Prescription for health, be proactive and responsible for your own health when well. Making you feel you have someone on your side much like an advocate on wellness.

21st century- visit. virtual tour at the Cleveland Clinic

Unfortunately, Annie’s friend who was diagnosed late with breast cancer received delayed diagnosis and thus treatment. She is presently dealing with a double mastectomy and Stage 4 cancer with metastasis.

In the old days, they use to say time is money, but it takes a new meaning when time saves your life. That is the dilemma for Canadians like myself brought up on universal healthcare expecting the government to provide coverage. The budget includes old age pension being threatened, so healthcare slashing is here to stay.

Our healthcare problems just did not start recently, another associate who is in his 80′s a businessman shared the story of how his mother when he was in his 50′s was very ill and the physicians thought it was in her head. Finally the family took her to the Mayo Clinic where they diagnosed cancer, but it was too late. The reason we never hear criticisms of the system is because those it failed are dead and they are no longer here to speak out.

What can Canadians do to protect themselves? Canadians should look at benefits their employers are offering, as well as looking into secondary healthcare providers. If you are sick, no matter what your financial status you need to have a back up whether critical illness insurance that pays a lump sum and the best part getting your principal back if you do not collect at age 70.

Ontario Health Minister Deb Matthews

Canadians need to speak up at the polls and to the government. We can no longer wait until a crisis hits or a loved ones is stuck in the push-and pull of getting timely treatment and having to pay for their life. Politicians need to be accountable.
Ontario’s Health Minister Deb Matthews announced that acute care hospitals should just be that and that there will be a shift towards stand-alone clinics, care at home and after-hours doctor visits. This is not rocket science but it will not solve our woes completely as one needs a trained personnel and with declining nurses who fills those roles. Will physicians work for profit in setting up for profit clinics and is this okay? When we speak about after hours doctors visits is this realistic given the number of people who do not have a primary physician.

It seems again, we have our finger in the dyke and the healthcare dam will again burst.

Let your opinion count contact Ontario Health Minister Deb Matthews and like the healthcare there is no direct route and need to go through her parliamentary assistants.

The Link Between Low Sunshine and Increased Rates of MS

Grey Skies over Toronto by CM

Where there is low sunshine, there are known increases in multiple sclerosis. Professor of clinical neurology George Ebers has published a study that demonstrates a strong correlation between MS and Vitamin D deficiency in Scotland.

Scotland has the highest levels of MS globally and the lowest level of vitamin D from a lack of sunshine and a diet low in oily fish. There was a recommendation to have the government to consider supplementing vitamin D through food. There are discussions of possible ramifications for the population to sue if there is a lack of implementation. The snag appears to be the Scientific Advisory Committee on Nutrition, which was due to issue new advice on vitamin D in 2014. Too late according to Professor George Ebers.

http://www.bbc.co.uk/news/uk-scotland-16255661

Noting Scotland gets on average of sunshine annually of 1189 hours and Toronto 2038 hours.

There are ongoing clinical trials in Canada including Dr. JM Burton in Calgary using higher dosages of vitamin D to reduce MS relapse rate. There have been noted benefits and collaborations with further trials at other hospital sites.

The Ontario government have stopped OHIP funding for Vitamin D tests. Tests have increased from 29,000 tests in 2004 to 700,000 in 2009. Although, obvious there are cost savings there is still a need for increased research studies on the benefits of vitamin D due to positive results of clinical trials.

The Impact of Psychiatric Medications on the Effectiveness of Tamoxifen Prescribed for Breast Cancer

 

Poison or not Poison, as individuals who are taking Tamoxifen need to understand all the risks including factors that impact on its effectiveness. Note there are no warnings or contraindications on the packaging.

Research has shown up to 50% of breast cancer survivors are depressed. Can you imagine taking medication that is suppose to prevent recurrence of breast cancer being ineffective because of antidepressant medication? So by taking your antidepressant this may in fact increase your risk for recurrence. Tamoxifen is the standard treatment for anti-estrogen pharmacological treatment for hormone receptor positive breast cancer in pre-menopausal women. Some breast cancer cells require estrogen to grow and Tamoxifen binds to the estrogen receptor preventing it from activating and breast cancer growth is blocked.

Some women may develop a mood disorder such as Major Depression and require pharmacological treatment. Also, Tamoxifen has a  potential side-effect of causing depression in 30 per cent of women. The treatment with Tamoxifen with certain psychiatric medications are contraindicated in that they decrease the effectiveness of the Tamoxifen. This makes the Tamoxifen less effective and give rise to increasing the recurrence of cancer. These medications listed are Pimozide (Orap), Fluoxetine (Prozac), Paroxetine (Paxil), Perphenazine (Trilafon), Thioridazine (Mellaril), Chlorpromazine, Citralopram, Clomipramine, Doxepin, Escitalopram, Haloperidol, and Sertraline.

In 1992 the Lancet published a review of a number of studies reported that pre-menopausal women who are ER-negative had absolutely no benefit from taking Tamoxifen, the majority of women who take Tamoxifen live no longer than women who do not take it,Tamoxifen reached its maximum protective effect on breast tissue with women who took it for five years and noted some breast cancers learned how to use tamoxifen to stimulate their growth.

A study presented at the American Society of Clinical Oncology’s annual meeting in 2009 found that after two years, 7.5 percent of women who took only Tamoxifen had a recurrence, compared with 16 percent who took either Paroxetine, Fluoxetine or Sertraline. The British Medical Journal, February 2010 found women who took Paroxetine and Tamoxifen notes that Paroxetin interferes with the way Tamoxifen works.

In numbers this means patients treated with both Paroxetine and Tamoxifen have a 67% increased risk of death from breast cancer. Quite scary for women who are on antidepressants and breast cancer treatment caught between treating breast cancer or a mood disorder probably precipitated by a cancer diagnosis. Knowing this information first hand, and picking the appropriate treatment with your physician can decrease your stress levels.

There is another controversy on whether one should have blood work to check on one’s metabolization that affects the overall effectiveness of Tamoxifen. As, Tamoxifen needs to be metabolized before it can be fully effective to treat breast cancer.  An enzyme in your body called CYP2D6 is important to convert the Tamoxifen to Endoxifen, which then can block estrogen. There are four levels of metabolizers: ultra rapid metabolizer, normal metabolizer, intermediate metabolizer and poor metabolizer. The poor metabolizer notes that your body is unlikely to convert Tamoxifen to the useable form and that a different cancer treatment should be reviewed with your physician.

The CYP2D6 blood test is one factor in determining treatment. Even if test is normal there maybe other unknown factors impacting on the result. There are other drugs that can interfere such as using over the counter medication like Diphenhydramine, which is in Claritin. Checking with your pharmacist is one of the key steps in being your own advocate.
This information is often not well known among family physicians, oncologists and even pharmacists.
Bloggers are online discussing pros and cons and where to get testing .

Obtaining the CYP2D6 blood test is not available in Canada despite the fact that Tamoxifen is the most prescribed form of treatment for pre-menopausal breast cancer. At the Mayo Clinic Clinic, USA this blood test costs approximately $60. In certain circumstances patients in Canada maybe able to be tested, but at a cost of approximately $500 with blood work sent over the border. This would have to be arranged by your oncologist. While Tamoxifen is the most widely prescribed cancer medication in the world generating revenues of US $265 million in 1992 and in 1995, worldwide sales reached $400 million there is no information or access to a blood test that is essential for its effectiveness. It is unclear why this blood test is not standard procedure for women prescribed Tamoxifen or even mentioned on their literature. This could be a question for the Canadian Health Minister The Honourable Leona Aglukkaq, P.C., M.P. and should be addressed in writing so further action can be taken on behalf of women being treated with Tamoxifen.

Knowledge is emPOWERment as it provides options in treatment and control of outcomes.

So, women can discuss with her physician if her mood disorder can be treated with another medication or another treatment modality such as cognitive behaviour therapy, daily exercise regime or mindfulness. Therefore not compromising her risk of recurrence of cancer, while on Tamoxifen or not.