Facilitating shared decision making

Doctors are trained to seek solutions to extending life as much as possible. This mission, known as the Hippocratic Oath, is reinforced at each turn in medical education and throughout doctors’ careers. Maintaining life is paramount.  But sometimes we have to listen to the voices of patients and find out what they want.  Encouraging shared decision making is paramount.

Shared Decision Making

Consequently, patients have often deferred to expertise and follow doctors’ recommendations without question. Some patients, particularly older adults, prefer to leave decisions to their doctors, as the ‘doctor knows best.’ But this approach conflicts with a move to support shared decision making in healthcare clinical practice.  

Shared decision making enables healthcare professionals and patients to work together. Patients are very much encouraged to be at the centre of decisions made about their treatment and care. Healthcare professionals must ensure that patients know the risks and benefits of having treatment and understand their options. Furthermore, doctors can tailor care to meet the needs of the patient. 

The openness to shared decision making can not only set the expectation for the ongoing patient-provider relationship, but it can also cultivate trust. Upon this foundation of trust, the patient is more likely to share details about their life and wellbeing. For example,  socioeconomic factors that may not be readily apparent to the clinician but may significantly impact care delivery. 

Through open and honest dialogue, the clinician can truly understand what matters to their patient and tailor care accordingly. However, both parties can only achieve this open and honest dialogue when they work together to build a foundation of trust; resulting in care consistency. But we do not always get it right.

Evidence indicates that doctors don’t always fully understand the concept of shared decision-making and don’t facilitate the approach well when conversing with patients. 

For example, the high priority on life-sustaining treatment can significantly compromise person-centeredness if the patient has a different perception of their life. 

This is the story of Mary.

Mary had given considerable thought to what she wanted her last few months of life to look like.  But she had a battle trying to get her oncologists to see life through her lens. Before we tell Mary’s story, let us quickly provide a little background information. 

Mary participated in a research project we were undertaking to explore patient experiences of communication within cancer consultations. Her despair and anguish at not being heard were evident in how she spoke to the researcher. She begged that her story be told and heard, hoping that people learn from her experience.  

My Diagnosis and Treatment

I was diagnosed in December 2000 with breast cancer. Over the years, I had a mastectomy, followed by chemotherapy, and radiotherapy and a clinical trial. I did my due diligence and went for regular check-ups but started to experience terrific problems with backache. During a routine visit to see my oncologist, I mentioned the pain.  He  arranged for me to have a CT and bone scan. 

Following these scans, I returned to the oncologist for the results. Unfortunately, the scans revealed that my cancer had spread to my liver, bones and lymph nodes. Not good. Unfortunately, this is when things started to break down with my clinical team, and my health deteriorated further. Not a great time for this to happen, you might say.

No continuity of care

I had no continuity of care with my clinical team. Each time I went to hospital I saw a different doctor.  Consequently, I got mixed messages from each of them.  No one seemed to know what they were doing with me I perceived a lack of care.  Eventually, I wrote a letter of complaint and sent it to the hospital. The Head of Clinical Services invited me to meet with her and discuss my concerns in person. Understandably, I was nervous about this and took my brother with me for moral support. He managed healthcare-related complaints in his local hospital NHS Trust. So, he knew what to expect and how to get our points across.  

Sadly, I felt that the Head of Clinical Services did not take my complaints seriously.  She only half answered my concerns. However, the doctor agreed that continuity of care was necessary and would benefit me infinitely. But it never came to fruition. I continued to see a different doctor on each visit.  Each doctor had different opinions about my illness and it’s management. So, fragmentation of care continued, and my health continued to decline. 

Without fail, during each visit, the doctors seemed stretched thin.  To the point that many didn’t have time to read my medical notes before seeing me. Consistently, I felt like I was on a conveyor belt. I was rushed into the consulting room and out again before I knew it. There were so many patients with so few resources that the doctors need for expediency was understandable but organisationally, inexcusable. 

Fast forward. Can Anyone Hear Me?

My condition wasn’t improving, and the oncologist recommended further tests and further chemotherapy. We knew the treatment would not cure me, but it might but me some time. But do you know what? I was tired. My failing health was apparent, and I knew my time was limited. Having a good quality of life without chemotherapy became so important to me. Chemotherapy made me feel lousy, and I was so tired of it. I couldn’t do what I wanted to do. What was the point of extending my life for a couple of months if I was only going to be sick? 

I explained to the oncologist that I didn’t want more chemotherapy.  She insisted that the chemotherapy would not make me ill and would extend my life. The doctor didn’t hear me, and as a consequence, we could not arrive at a mutually agreed decision. It was suggested that I go home, read some literature about chemotherapy and come back the following week to discuss things further.  

Read my notes, please!

I duly went home and came back to the clinic the following week. The registrar and not the consultant saw me. She admitted that she was running late and hadn’t had time to read my notes.

Unfortunately, the doctor assumed that I was there for a routine appointment to see how I was getting on. So, I had to explain yet again, that I did not want to receive further chemotherapy. The doctor put me in the embarrassing position of watching her flick madly through my medical notes to catch up. It was frustrating, distressing and disrespectful. 

Once the doctor had read my notes, she asked me why I didn’t want further chemotherapy. I explained that I wasn’t interested in treatment if it was going to compromise my quality of life for the sake of another month or two. We then entered the merry-go-around, where she and the oncologist thought I should have treatment, and I said I didn’t want it. 

I just thought, “Oh my god, no one is actually listening to me”. 

Ganging up on me

I calmly tried to reinforce my position but to no avail. The consultant arrived to speak to me. It felt like they were ganging up on me. I felt assaulted by the time I walked out. The oncologist was thinking, ‘oh my god, I have had this conversation with this woman before.’  It was written across her face as she stood in the doorway; arms folded. 

Here, I emphasise listening isn’t the same as hearing. Though this oncologist remembered my spoken words, it was evident that she wasn’t actually listening to me. In other words, both doctors were trying to persuade me into making a decision that they believed was right for me. 

They thought I should undergo any treatment necessary and tried to push me into making the same decision. This was despite my recurring verbal opposition. A dignified end to my life, was about gaining control and I didn’t see that chemotherapy would help me achieve that. Nor was bullying me into making a decision I didn’t want. 

We Are Supposed to be a Team

I did not have it in me to keep fighting an uphill battle with those who were supposed to be on my side. I barely had it in me to fight the common enemy, which was my diagnosis. Clinicians are supposed to be on your side and help you in whatever way will serve you best, which isn’t always in line with their motivation to sustain life. Often, clinicians can understand how to help best by just listening and being engaged with their patients. However, this is significantly difficult with systemic fragmentation in the healthcare system that compromises the ability to form a single clinician relationship. 

My oncologists want to do what they think is best for me, but they act superior to me and my judgement. As a consequence, we can’t share decisions, and they fail to meet my needs. None of them has shown any warmth to me. Instead, I sit there defensive with my guard up, wondering what they will say this time. 

Banging my head up against a brick wall

In my last consultation, I felt immense frustration, to the point where I felt as though I could have banged my head against the wall. I know the preservation of life is paramount. They want me to live as long as possible, but I have a different perspective. Living a long life isn’t my goal anymore. Let’s face it; I am dying. I have reconciled myself to that.  

I want to cling to dignity and independence and maintain some control for as long as possible. If I go down the chemotherapy route, it will take away that independence for sure and some of my dignity. And for what? To give me a few extra months? They assume I have given up, yet it is precisely the opposite. I haven’t given up, I now want to control my dying. 

In contrast, when I see the palliative care team, they ask person-centred questions, like “How can we help you have less pain”? ‘What can we do together?’ They listen to me and approach my care so differently. I am part of the team, and they value me and my views. It is like a breath of fresh air. I feel so positive when I leave those consultations. Does that sound weird? 

If I could tell my care teams anything from my own experience:

  • Actively listen to and understand patients and what matters to them.
  • Treat your patients as equals.
  • Give information to help them make informed decisions. 
  • Take feedback constructively, and act on it.
  • Build a relationship together. Laugh with your patients and enjoy the time you have together. Make sure they feel valued. 

While the issue of fragmentation in care may be beyond the control of individual clinicians, explore the possibilities in your organisation to enhance person-centredness and consistency in care. Support your patient to feel valued, recognised, and significant. 

'I just thought oh God, no one is actually listening to me'
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