Tag / doctor patient relationship

by Jacqueline Chartier

Respecting the Person Behind the Cancer Diagnosis

One theme that I’ve discussed in The Teal Diaries before is identity, both self-identity and how we’re perceived by others. Sometimes the health care system and the medical establishment are especially challenging to our mental health—we are made to feel anonymous and are often reduced to nothing more than numbers or charts, it hurts that we are being robbed of our individualism. I was personally made to feel an acute lack of identity when some nurses and hospital workers didn’t call me by my correct or preferred name. Their error would stem from the fact that I’ve always been called by my legal middle name, and not my first like most people. 

Loss of identity is the heart-breaking reality for many cancer patients as we find ourselves navigating the hospital or other medical institutions. We feel ourselves diminished and our individual worth slipping away. As patients much of our privacy and control is essentially gone, on a hospital unit we must wake when we are told, wear what we are told and eat what we are told. Often, we don’t have the luxury of a private room, we must share a room with whomever, they say we have to. 

In his classic New York Times bestseller Being Mortal: Medicine and What Matters in the End, Atul Gawande examines identity and how it’s often diminished for residents of hospitals and nursing homes. The author, a medical doctor, uses case studies and also discusses the reality of chronic illness and ageing within his own family. Gawande writes that the battle of being mortal is the battle to maintain the integrity of one’s own life—to avoid being so diminished or dispirited or subjugated that who you are becomes disconnected from who you were or what you want to be. 

One of the most significant mental health issues that I’ve recognized, both in myself and other cancer patients, is what the disease does to our self-identity. It’s as if we have to fight to remain ourselves after we are diagnosed with cancer. There are days when I feel caught in the middle of something. Although it’s true that ovarian cancer has substantially influenced my lifestyle, and to some extent how I view the world, it’s not all I am—I’ve struggled to make even those closest to me understand this paradox. It’s difficult to explain that while my self-identity is not entirely unchanged, I will always remain so much more than a cancer survivor or an oncology patient.

Regrettably, over the course of my journey, I’ve learned that our society still has misperceptions about chronic illnesses, such as cancer. and that there is still indignity for those of us living with such conditions. For instance, one family friend became rather reclusive when she was informed that I was going through cancer treatment and behaved as if a cancer diagnosis might be contagious. She further assumed that all chemotherapy patients lose their hair and immediately offered to loan me an old wig she had. 

But then, this legacy isn’t surprising considering the profound fear, confusion and stigma surrounding cancer for centuries. Until relatively recently the word was hardly spoken in public or said out loud. It’s no wonder that some of us living with cancer still choose to avoid revealing our illness to anyone outside of our inner circle of family and close friends. We don’t want to be viewed differently—we just want to be normal, not defined by the disease. 

Lene Andersen is a health and disability advocate living in Toronto. She’s lived with rheumatoid arthritis since she was four years old and now uses her experience to help others with chronic illness. I was encouraged by some of Andersen’s advice in a recent article she wrote for HealthCentral, a website aimed at people with chronic or serious conditions. In her piece, Feeling Like a Cog in the Healthcare Machine? We Get It. Anderson shares tips about how to get doctors and other members of your health care team to see you as a person, not just a patient. She recommends the following four strategies to help strengthen your relationship with health professionals:

Empower yourself. Remember that you have ultimate power and control over your life. In particularly intimidating situations, like being tended to by a senior doctor trailing a group of medical-school residents, feeling in control will understandably require more effort. Repeating a phrase like “nothing about me without me” in your mind might help you to sit taller and find the power to speak up instead of shutting down in front of this unexpected audience.

Be honest. It can be difficult to share some of your deepest fears and private questions with a relative stranger, but being honest with your doctor will help them develop a treatment plan that works for your situation. What’s more sharing what really matters in your life pushes you, the person, to the forefront of the discussion.

Take the lead. Coming to your appointments prepared and taking the lead emphasizes that you’re not a passive recipient of care, but an active partner, this helps to take everyone involved in the consultation off of autopilot and back to seeing you as an individual. Also if your questions have been answered and your treatment supports your life goals, you’re more likely to feel good about following your doctor’s recommendations.

Be a person to your doctor, too. Remember that your relationship with your doctor is a relationship with a person, so treat them with the same compassion and respect you would anyone else. Ask your doctors how they are doing and you’ll probably be surprised by how grateful they are for the question. You may also want to share information about your own interests, making it part of the conversation about your goals or your quality of life. Every time you chat about something other than your health, it helps build a connection with your doctor.

by Jacqueline Chartier

What Cancer Patients Can Teach Medical Students

When I began my cancer treatment almost eight years ago, I didn’t fully understand the crucial role that patients have in the education and training of medical professionals. I was new to the realm of cancer patients, so at my initial consultation with my oncologist I didn’t anticipate that I would be taken to a conference room. I certainly didn’t expect that our first meeting would include several residents and doctors-in-training.

Later, when I had the opportunity to read the orientation booklet that I was given, the formal relationship between gynecologic cancer patients and student doctors at my hospital started to become clearer to me. Stated unambiguously was the following information:

“The Tom Baker Cancer Centre and Foothills Hospital form part of the University of Calgary teaching facilities and you can, therefore, expect to have doctors-in-training involved in your care. They work to assist your specialist, who supervises all their activities according to their level of competence. They may also participate in routine check-ups and will report to the specialist on your behalf.“

Throughout the course of my cancer journey I’ve discovered how much we, as patients, help facilitate the transformation of young medical students into proficient and empathetic health care experts. Here are some of the most important lessons that I feel we teach physicians in training.

People with cancer are brave and have a remarkable capacity for resilience. Women with ovarian cancer courageously put up with a terrible illness and refuse to give up in the face of adversity. Whether we are talking about cancer, disabling cardiovascular disease or other chronic illnesses — patients often inspire young doctors with their bravery and determination. For example, I could tell that the women on my cancer unit were having an impact on the residents when they made rounds each day. Sometimes they would witness women surrounded by their visiting loved ones, still managing to laugh, smile and remain optimistic, despite the horrendous circumstances.

Life can change in an instant. A chronic or serious illness such as cancer often strikes out of the blue. One minute everything is okay and you seem not to have a care in the world and then everything is turned upside down by a shock diagnosis. Before I was diagnosed with cancer, I had no true sense of how precarious our existence is or of how uncertain my future had probably always been. Then, on November 3, 2011, I learned that the direction of my entire life could change in just a single day. We help young residents to remember that becoming a patient with a life-threatening illness can happen to anyone in an instant, even them.

As a doctor you should know how to communicate effectively with your patients. Illness can suffocate even the bravest of souls. Diagnosis and procedures can be complicated, and a patient often feels vulnerable and confused when they are at their oncologist’s office or visiting the cancer centre. Personally, I found this to be true regardless of my reason for being there, it didn’t matter if it was for chemotherapy, an exam or a follow-up. From the perspective of an anxious cancer patient, the absolute worst thing that could happen would be for me to walk out of an appointment without understanding a word my doctor said. It’s a doctor’s responsibility to explain everything in a way their patient can understand. As a physician, you shouldn’t get upset or become annoyed if you are asked to repeat details of the patient’s treatment plan or to clarify instructions.

As a doctor you should be able to empathize with your patients. To me the best doctors take time to connect with their patients, and they truly care what we are thinking and feeling. If your patient is feeling cold, arrange for a blanket. If they’re thirsty, get some water. Without addressing these underlying human needs, impressive hospital designs and state-of-the-art equipment are useless. For most patients the fancy ceiling and lighting are insignificant compared with medical staff who will treat them with compassion and dignity. I have one particular memory from during my rigorous cancer treatment.

It was in the middle of the night and I had already spent several grueling hours in the emergency room when I was finally sent for a CT scan. The doctor performing the scan was very empathetic toward me. He immediately noticed that I appeared cold and nauseous, so he offered me a blanket as well as a small basin just in case I was sick. Next, he saw that my IV had been put in poorly by someone in the ER and that it required redoing. However, instead of changing my IV before the scan, he explained that he didn’t want to put me through the unpleasant procedure right away. We ultimately used the imperfect IV line to administer the contrast solution for the scan and it held out until we were finished.

by Jacqueline Chartier

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.

by Jacqueline Chartier

A Matter of Trust

trust-broken

Even before my cancer diagnosis three years ago I understood that trust is one of the central features of the patient-physician relationship. Ideally when I come under a physician’s care I should trust in my doctor’s competency and in their commitment to me as a patient. When I undergo medical treatment I must also trust my physician or surgeon to put my welfare above his or her own self-interest. Ethically my physician should always place my needs above obligations to other groups and advocate for my welfare.

This bond of trust has played a dominant role throughout my cancer journey, especially when I’ve undergone major surgery or consented to treatments such as chemotherapy. I met my oncologist in November 2011 and I continue to trust in his medical expertise and sound judgment when it comes to treating my disease. I know he and other members of the team at the Tom Baker Cancer Centre have placed my best interests before anything else. Still I regret to say that there was a critical point during my cancer treatment when I began to have irrational doubts about my surgeon and his medical colleagues.

Doctor's Touch

Looking back, several factors were instrumental in causing me to temporality lose confidence in my surgeon. In the spring of 2012 complications arose due to my cancer treatments. Two previous surgeries had resulted in scarring and adhesion of my bowel and at the time the blockage was probably being exacerbated by the chemotherapy I was undergoing. I was terrified of what might happen and despondent about my situation when I ended up a patient on the genealogic oncology unit for the third time. I was admitted through the emergency department and I could sense that my situation was extremely serious or potentially life-threatening. Worst of all I was in a tremendously weakened physical condition and my psychological state could best be described as anxious and confused.

My trust in my surgeon began to deteriorate due to communication issues. While he is a highly skilled oncological surgeon, like many doctors he is not always strong when it comes to exercising interpersonal communication skills. He rarely spoke to me or came by my room—we never really had a conversation to reassure me or to discuss my condition in detail. Instead it was typically surgical residents completing their 7 a.m. rounds that I saw for a few minutes each morning. In about the second or third week of being confined to a hospital bed with orders not to consume food my fear and imagination began to run out of control. Was my surgeon really qualified and capable? Had he played any role in creating the serious complications I was now facing?

Meanwhile, some family members and other non-medically trained individuals only increased these suspicions and fears. They suggested that perhaps I should not trust my surgeon and that I should try to get another specialist to operate on my bowel blockage. As the scheduled date for my surgery approached I became virtually obsessed with how vulnerable I was and how I would be literally placing my life in my surgeon’s hands.

Surgical-Instruments

I had previously trusted my surgeon and thought of him as a conscientious and vigilant medical practitioner, now I had almost convinced myself that he might be the opposite. Was he a cowboy? As explained in Dr. Brian Goldman’s book The Secret Language of Doctors cowboy is a slang term to describe a surgeon who is excessively reckless or careless with patients. In the bestseller a cowboy is described as someone who rides by the seat of his pants. It’s someone who kind of does things quickly. They’re trying hurriedly to do everything in a somewhat haphazard fashion, hoping like hell it all comes together at the end. Cowboy is also used to refer to a surgeon who perhaps doesn’t have the best judgment—someone who operates first and asks questions later.

Of course there were moments when I had nagging doubts that I could endure another surgery, I had just been through two major operations. This had made me all too familiar with the overwhelming physical and emotional impact that abdominal cancer surgery has on a woman. In essence I agree with Dr. Goldman’s opinion regarding the consequences of surgery.

“The thing I find many surgeons fail to appreciate is that an operation is a form of controlled violence on the patient. If surgeons thought about what they do to patients on a daily basis, I suspect many wouldn’t do it. Even the most successful surgery causes severe (albeit manageable) pain. For patients relieved of their condition, post-operative pain is bearable—but not so much when the surgery results in complications or worse.“

Dr. Brian Goldman, The Secret Language of Doctors

Finally on June 18, 2012, I signed the appropriate documents and critical surgery was skillfully performed. When I awoke in the recovery room I sensed that my crisis was at last resolved. Although only half-conscious, I was filled with elation as they informed me that the procedure to correct my obstruction had been successful. The primary cause was established to be scar tissue from my previous operations and now my digestive system was expected to function normally again. Most of all, I was comforted and reassured by the fact that my ovarian cancer had not visibly metastasized to other organs in my body. After a long, tumultuous journey my fundamental trust in my surgeon had ultimately been restored.