How do patients with blood cancer make decisions about their treatment?

Background

Involving patients in decisions about their own treatment has been shown to increase satisfaction with treatment. It is seen as a hallmark of quality care. However, it is a complex process to undertake, requiring a lot of elements to be in place before it can succeed. Observation in clinical settings often finds that treatment decisions are mainly made by doctors with little patient input. We wanted to explore how treatment decision making (TDM) was happening with a group of patients with chronic blood cancers. These cancers are complex, some requiring intermittent treatment over many years. Little is known about the views of these patients regarding the decision-making processes for their treatment.

Understanding blood cancers

Our patients typically had indolent cancers which cannot usually be cured and can remain dormant for long periods of time; or they can be controlled with periods of chemotherapy and then active monitoring known as Watch and Wait (W&W). These pathways are associated with variations in the extent of hospital activity, with periods of disease progression, relapse and treatment requiring more consultations and decisions, and W&W having fewer contact points, often months apart. The treatment of blood cancers is a rapidly changing field, with the recent development of innovative treatment therapies. These developments have increased the complexity of making decisions about treatment for both clinicians and patients alike.

What patients told us about TDM

In our conversations with patients five themes were identified that we discuss in full in the research article. They were:

• Preference for clinician recommendations
• Factors that were involved in patients contributing to TDM
• Proactive or more disengaged approaches to TDM
• Experiences of TDM at various points in their disease timeline
• Support from others with their decisions and treatment

The main finding of our research was that patients had a strong preference for treatment recommendations from their consultant. This was largely based on trust in their expertise and warm, empathetic relationships with their doctors.

A story of support and trust

The needs and desires of the patients we talked to were as varied as could be expected from any group of people, and a wide range of opinions are discussed in our research. One main theme did emerge from most of the patients: they wished to be informed about, and given the opportunity to discuss treatment benefits, risks and outcomes with their doctor, but ultimately, they preferred that the doctor made a recommendation.

The preference for a recommendation from their consultant was based on the patients’ respect for their clinical knowledge and expertise, trust in their professional judgement and faith that they would have the patient’s best interests at heart.

Quotes from patients about their clinical team

Why, and how far, patients got involved in TDM

There were a wide range of individual and contextual factors in the level of involvement in decision-making that people engaged in. These included:

• How complex the decision was
• Their ability and desire to access, interpret and retain information about their cancer
• Personal preferences and values about being involved
• Their physical or mental state at the time, and how they were dealing with often bad news
• The level of support they had from others around them

Quotes from patients about why they did or did not get involved

Involvement or disengagement from TDM

Those who chose to be involved in TDM described the need for resources (internet, time), skills (retrieving and interpreting relevant information) and a high level of personal commitment. They tended to get information from many sources: UK charities, support groups, patients forums, clinical nurse specialists and peer reviewed articles.

Many respondents showed little or no desire to engage in TDM, preferring to place their trust in their doctors and to ‘let them get on with it’. They sometimes described difficulties accessing or fully understanding information about their cancer. Some didn’t want to dwell on their disease and how it was developing, often as a mechanism to cope with their feelings. Sometimes people could simply be feeling too unwell, anxious, overwhelmed or unsupported, to engage fully with the TDM process.  

Quotes from patients about their level of involvement

How things changed as the blood cancer developed

Patients’ desire and ability to engage with decisions about their treatment could change as their disease progressed. Initial shock and anxiety could make it hard to absorb information or think of things to ask the doctors about. Sometimes, patients had only one treatment option available to them. At times, they felt that the treatment decision was automatic, in accordance with a standard procedure, or, that it came with a strong recommendation from the consultant.

When urgent treatment was required there might be  little opportunity to engage in shared decision making with the consultant. In these instances, when things were happening at speed, the patient was reliant on the expertise of their consultant and team.

At other time points, the decisions were just too hard, leaving people feeling overwhelmed. Intensive treatments that could impact badly on their quality of life; those with a high level of risk for limited returns; and uncertainty of treatment outcomes, could all make engaging in TDM too hard to contemplate.

Quotes from patients about how things changed

Support for TDM from others

Support from others was often a crucial factor in enabling patients to engage with decisions about their treatment. Relatives were often present at consultations, and took notes, and could fill in gaps for the patient when reviewing information afterwards. Being able to go over what had been discussed, and the options available, with someone else who also knew everything, was a major factor in helping patients to feel able to engage with treatment decisions.

Practical and emotional support from friends and relatives during treatment was also invaluable to patients. It was mentioned often in the interviews as making all the difference to their ability to cope in the strange new world they found themselves in. 

People without a spouse/partner to share their feelings and experiences with, sometimes sought formal psychological support to fill this vital role. Unaccompanied patients said that they really benefitted from a nurse taking notes during the consultation and going through the information afterwards. Some patients expressed a reluctance to burden friends or family members with all the information about disease and treatment, though this meant they missed out on the benefit of discussing their options with someone who knew them well. 

Other forms of support that helped with TDM included joining support groups where patients could attend talks by experts and share experiences with others going through similar treatments. A few people who didn’t like attending groups were offered the opportunity for one-to-one meetings with former patients by their doctors, or made personal contacts with someone with the same diagnosis, sometimes via online forums.  

Quotes from patients about the support they had

Main messages from this research

We have seen how many factors impact a patient’s ability and willingness to engage with TDM. This is not static, but something that is likely to vary over time, along with the fluctuations of their disease. This finding indicates that there is a need for clinicians to assess the patient’s preferences at multiple time points over the course of their treatment journey, to try to ensure that their need for information and involvement (or not), is being met.

Most patients who were happy to let the consultant decide the treatment, still expressed a desire to be fully informed of the reasoning behind the decision and to have a full discussion of the possible options. Sharing the deliberation aspect of the decision making is a strong indicator of a good relationship between patient and clinician. Understanding and ownership of the decision by the patient can help emotionally as the treatment proceeds, especially where it is a difficult one with uncertain risks and benefits.

It is important that information is tailored to where the patient is at that moment in time, in terms of their ability to engage with it both intellectually and emotionally. Patients without support from family or close friends may benefit from a referral for psychological support to help them discuss their feelings and options.

Read the full research article

A note on how we undertook the research

As far as we are aware this is the first UK study to explore the involvement of patients with blood cancers in TDM. We spoke to 35 patients in-depth about their experiences. Ten relatives were present and contributed. The patients were chosen from specific disease subtypes (chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma, and myeloma), both sexes and various age-groups. It was important to include patients whose perceptions may have altered over time, during prolonged periods of Watch & Wait, or following treatment, to capture as broad a range of views as possible. To counteract the influence of memory, we also invited some recently diagnosed patients to take part; reference to patient diaries and contributions from relatives also enhanced recall.

We were unable to recruit patients from black and minority ethnic backgrounds or those with low levels of literacy. We therefore recognise that the views of our participants are unlikely to reflect those of the entire population with these diseases. Nonetheless, it is highly likely that a large proportion of our findings are transferable to other UK areas, and also countries with similar health-care infrastructure and universal health-care coverage.