Tag Archives: patient-centred health care

Five Tips for Communicating with Your Oncologist

Know Your Rights

You have a right to be treated with dignity and respect by hospital staff and by all members of your oncology team. Every cancer patient should be provided with complete and accurate information regarding their condition, including their prognosis. The medical professionals heading your cancer care team have a responsibility to explain your diagnosis, treatment options and other information in clear understandable terms.

Ultimately you have a right to be an active participant in your treatment plan, it’s your disease and your body. It’s your right to either consent to treatment or refuse a procedure suggested by your oncologist. For example, you can refuse to sign a consent form if you feel everything hasn’t been explained clearly or you can cross out part of a consent form that you don’t want applied to your care. However, remember that if you do refuse a treatment your oncologist is required to explain to you the medical consequences of your decision.

Doctor's Touch

 

Recognize Your Responsibilities

It’s 2017 and it’s your responsibility to be active in your care and to advocate for yourself. Just a generation or two ago doctors were like gods in white coats, you didn’t dare question their authority and the fact that they had graduated from medical school meant that they were in control of the decision making. Patients are no longer passive or expected to behave like children or second-class citizens in a doctor-patient relationship. Today, the treatment of cancer and other life-threatening diseases is a collaborative process. You should do your best to be well informed and to ascertain the benefits and risks of each procedure or treatment offered to you.

Many cancer patients, including myself, have discovered that the level of responsibility put on us is quite high. We are responsible for adhering to a complex treatment regimen proposed by our oncology team. Treatment as an outpatient generally includes chemotherapy, radiation and regular follow-up appointments. Keeping track of all these scheduled procedures, medications and other detailed instructions can sometimes make an individual feel overwhelmed. If this happens, don’t be afraid to ask for help or to inform your family and your professional cancer care team.

 

Come Prepared

If you’ve recently been diagnosed with cancer, chances are your mind is spinning and you have literally dozens of questions that you feel you need to ask your oncologist. Where do you begin and how do you best prepare for an appointment? I recommend composing a list of questions and placing the ones that you think are the most important fist. As a patient, you’re entitled to ask your health care providers anything, in that sense, there are no right or wrong questions. However, being prepared will help you get more out of your interaction with your health care providers.

Here are a few of the most essential questions that you might need to go over with members of your oncology team.

Can we please review the next step in the plan?
Why are we doing these tests?
Why am I receiving this treatment?
What are the side effects of this medication?
How effective is the treatment?
Please explain how the treatment will help.
Why do you think that this is the best treatment for me?

clh-tom-baker

 

Acknowledge That Doctors Are Human

When talking with your oncologist, you should always remember that you’re dealing with a human being, doctors are not gods or saints. Yes, they have specialized medical knowledge and unique and difficult to acquire skills, but that doesn’t mean they can’t make mistakes or feel emotions. Studies have revealed that anxiety and depression are equally prevalent in the medical profession as in the general population and more worryingly, addiction and suicide rates are actually higher than the general population.

Physicians are still cultured to show no weakness, that vulnerability is a sign of incompetence. Although medical professionals encourage patients to seek help, admitting that they themselves sometimes encounter physical or emotional issues can be seen as a character flaw. Remember that your oncologist is a human being in a highly demanding and extremely stressful profession.

 

Value Honesty

Even before my cancer diagnosis five and a half years ago I understood that honesty is one of the central features of the doctor-patient relationship and that without honesty there can be no trust.

Still, doctors have this nasty habit of asking a lot of questions. Many of their inquiries make us uncomfortable or self-conscious, so we sometimes bluff. Here are a few of the most common issues that patients are dishonest about.

Many patients lie about the medications they are taking and whether they are taking them as prescribed.
Some patients are deceitful about whether they smoke.
Patients are often hesitant to discuss how much alcohol they consume.
People will often tell their doctor that they exercise regularly and eat a healthy diet, but not adhere to these practices.
Occasionally a cancer patient will lie when they experience pain or other possible symptoms of recurrence in the hope that their oncologist won’t find anything wrong.

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Hospitals: Are They Still Places for the Sick to Get Well?

I suppose I’m incredibly lucky, having never been admitted to a hospital as an overnight patient until a few years ago. Inevitably like many cancer survivors I’ve undergone an unhappy transformation, I’ve been transformed from a hospital newbie into an experienced pro. Now that I’ve completed active treatment for ovarian and uterine cancer, I can boast approximately 70 days of my life spent looking at the world from a hospital bed. It’s no wonder that I was almost brought to tears recently while reading an article by André Picard, the Globe and Mail’s public health reporter. Picard nailed it perfectly in his recent article Taking patient-centred health care from rhetoric to reality.

“So, what do patients dislike about being in the health system – aside from being sick, of course? A number of things: the helplessness; the feeling of anonymity; the discontinuity of care; the rote and the repetition; being talked about and talked to, rather than talked with; the waiting; and the loneliness.”

This epitomizes my experience as a cancer patient in so many ways and it also hints at what I believe are the limitations of most Canadian hospitals.

 

What Hospitals Are Not

During my cancer surgeries I often felt an urgent need to leave the hospital and go home, I never felt relaxed or like I could take my time to heal. These days, it may be easier to define hospitals by what they are not. They are not places for the sick to get well, not unless healing takes place in the brief interval of time that makes the stay a compensated expense. My hospital treatment was primarily covered by Alberta’s universal health insurance, but I needed my personal Blue Cross insurance plan as well. Through it all I was aware that hospital beds in Alberta cost around $1000 per day and that those beds are in limited supply.

I watched as some short-term stay patients were relegated to the hallway due to the unavailability of rooms. It was a reminder of how drastically the situation for patients and their families has changed in the past couple of decades. Once hospitals were where you stayed when you were too sick to survive at home; now you go home anyway, cobbling together your own nursing services from friends, relatives and drop-in professionals.

Foothills_Hosp

The Foothills Hospital in Calgary is one of Canada’s largest medical facilities.

 

Turn Down the Noise

Like overcrowding the noise level in most hospitals has grown considerably worse over the past several decades. Dr. Brian Goldman recently discussed this topic in a blog post titled Hospitals bring down ‘da noise. Since 1960, the average daytime noise level in hospitals has gone up 200 per cent. Over the same period, the noise level at night has gone up 400 per cent. The World Health Organization says that for optimal health, the noise level in a patient’s room should be no higher than 35 decibels during the day, and 30 decibels at night. That’s the level of quiet conversation. In spite of these guidelines a 2012 study by researchers at The Ottawa Hospital found that the noise level on one unit averaged 76 decibels, that’s the noise level of a vacuum cleaner.

My personal experience gives an even more graphic example. At one point I had the misfortune of being hospitalized during some construction on the gynecologic oncology unit. Many staff members were apologetic and upset by the constant racket that we all had to endure. There were times when it sounded like a jackhammer and the noise levels had to be over 100 decibels. I believe that these circumstances were detrimental to my health and curtailed my ability to rest or heal properly. Actually, several studies have confirmed that excessive noise or disturbed sleep affects the immune system and delays recovery from major surgery.

 

Hello My Name Is

The medical professionals that I’ve encountered have all been competent, but what is often lacking is a sense that I’m a unique human being and not just a numbered chart or an illness to be discussed. British doctor Kate Granger recently passed away from cancer, but before she died she drew global attention to the impersonal care that patients in hospitals often receive. When Granger entered the hospital, her greatest anguish came from the fact that she was not treated as a person, but as an object on which tasks were performed. “I just couldn’t believe the impersonal nature of care, and how people seemed to be hiding behind their anonymity,” she recalled. Dr. Granger noted that, when people introduced themselves, it was comforting and made her feel safer and more like a person than an illness.

kate_Granger

Dr. Kate Granger left an important legacy.

While facing her own terminal cancer, Granger launched a spontaneous “Hello my name is” campaign urging health professionals to introduce themselves to patients. More than 400,000 staffers with the National Health Service in England have embraced the philosophy, and there are offshoots in Australia, France, Germany, Italy, the United States and Canada. Meanwhile the campaign is still gaining momentum on social media, the hashtag #hellomynameis has been used more than one billion times.

 

 

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Filed under cancer doctor-patient relationship, cancer psychological impact