Supporting people with deteriorating conditions through the G-AP process

People with deteriorating conditions are likely to have hopes for the future and things they would like to achieve or feel better about. However, given the nature and trajectory of their health condition, it can be challenging for rehabilitation staff to support people with deteriorating conditions through the goal setting process.

Fiona - Anonymised case study

Fiona is in her forty’s and has motor neurone disease. Her symptoms have been slowly progressing over the past 4-5 years – she is now unable to walk and uses a wheelchair. Fiona was previously very active and is struggling to come to terms with her deteriorating physical abilities. Fiona’s goal was to get back to walking short distances in the house. She hoped that the physiotherapist would help her to increase her strength through working on an exercise programme. This presented a dilemma for the physiotherapist given the nature of her condition.

What are the options for managing this dilemma?

How should the physiotherapist support Fiona moving forward? Often, there is no absolute right or wrong approach, but rather various options with pros and cons that need to be considered for each individual person. Consider the following options to support Fiona (this is not an exhaustive list). Think about the potential advantages and disadvantages of each approach either on your own or with colleagues – what do you think would be a helpful way forward with this dilemma?

Option 1. Shut the goal down

Given the nature of Fiona’s condition and the safety concerns around walking, a reasonable option is to support Fiona to understand that this is a not a safe or realistic goal and that working on an exercise programme will not achieve the necessary strength to support safe walking.

Potential advantages of this approach

  • Fiona’s expectations are not raised unrealistically
  • Fiona’s safety is not compromised
  • Physiotherapy time is not wasted on unachievable goal
  • Physiotherapist keeps control of the rehabilitation agenda

Potential disadvantages of this approach

  • Fiona feels the physiotherapist doesn’t ‘get it’ and wonders if rehabilitation is going to help
  • Fiona’s hopes for improvement are dashed which makes her feel sad
  • Fiona feels that she has no control over her rehabilitation
  • Fiona does not have the opportunity try an exercise programme and work out for herself if its helping or not, thus helping her to adjust

Option 2. Break the goal down into steps

The physiotherapist can see that this goal is very important to Fiona. She doubts that an exercise programme will make any difference to her mobility status, but a tailored and safe exercise programme might help Fiona to feel that her priorities matter and that she is taking some control. The physiotherapist wonders if by thinking through an exercise programme or trying the exercises out, Fiona will better understand and accept her imitations, which in turn will help her to adjust or disengage from this goal and focus on other alternatives.

Potential advantages of this approach

  • Fiona feels heard and knows her priorities matter to the physiotherapist
  • Fiona feels hopeful that she can improve her situation
  • Fiona is supported to think through how confident she feels about doing the exercise programme and what the barriers might be.
  • Fiona has an opportunity to try the exercise programme out and reflect on whether it’s helping or not
  • Fiona and the physiotherapist can learn together what’s possible/not possible and talk through other options
  • Fiona was just going to do it anyway, at least she has the physiotherapist there to guide her, make sure the exercises are safe and to talk though how things have gone, thus providing her with support and the opportunity to adjust.

Potential disadvantages of this approach

  • Fiona’s unrealistic expectations are heightened
  • The exercise programme may make things worse – e.g. increase fatigue
  • The physiotherapist is concerned she is wasting valuable rehabilitation time on an inffective intervention
  • The physiotherapist feels that other team members do not support her approach which has a negative impact on team work

Option 3. Open up the conversation and explore this goal further - what's in it for Fiona?

The physiotherapist is curious about what this goal means to Fiona – what’s in it for her? Fiona explains that she is spending too much of her time ruminating about the future and all of the inevitable difficulties she and her family will encounter. She used exercise as a way of coping with challenges in the past. She needs to focus on something day to day that keeps her more grounded in the present and helps her to feel that she can cope. The physiotherapist understands the exercise programme is not just about walking; it’s also providing a focus and having strategies in place to cope on a day to day basis. This new insight opens up the conversation to explore other activities and strategies that may be helpful for Fiona. They discuss a range of activities that Fiona might find helpful including listening to podcasts about mindfulness and creating electronic photo albums for her family (something that she has been thinking about for some time). Fiona agrees an action plan to talk to her family and a close friend about these activities and to see if they can support her with them.

Potential advantages of this approach

  • The physiotherapist understand that her goal is really about improving Fiona’s quality of life and feeling she can cope better on a day to day basis – this opens up new goal discussions
  • Fiona feels there are things she can do to take more control and feel better on a day to day basis
  • Fiona feels hopeful that she can improve her situation
  • The physiotherapist feels that she and Fiona have worked collaboratively through this goal and that this is what being person centred is all about

Potential disadvantages of this approach

  • This was a time consuming conversation, the physiotherapist wonders if she can justify time spent on this given her busy caseload
  • The physiotherapist wonders if this conversation is really within her scope of practice

Discussion points

  • Given the potential advantages/ disadvantages of each approach, which one(s) would you try first? Why would you try this approach first?
  • When working with people who have deteriorating conditions, should the focus of goals shift from improving impairments and function to supporting use of effective coping strategies and enhancing quality of live?
  • Can you think of any other situation where you tried to support a person with a deteriorating condition through the goal setting process? What went well? What didn’t go so well? What did you learn from that experience?