Continuing a series of posts from members of the ACTION Consortium about their European study that aims to investigate how to support people with advanced cancer to have a conversation about preferences and wishes.
Francesco Bulli, Alessandro Toccafondi and Guido Miccinesi, members of ACTION Team Italy, explore the perception of hope in the Advance Care Planning process.
Hope is a critical and sensitive issue in cancer patients; it should be taken into consideration by clinicians and also in an interpersonal perspective.
Advance care planning (ACP) is an ongoing communication process that “enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate.” 1 In order to do that, patients and family caregivers are invited to explore their own fears, hopes and needs.
It is widely recognised that hope is a crucial feature of human life for developing coping strategies and improving quality of life, particularly in case of a serious illness. 2
In the ‘Respecting Choices’ ACP programme there is a specific section that aims to explore patient’s hopes for their current medical care plan, and what they would hope in case these current hopes do not come true. Both in the feasibility study and in the Italian training for ACP facilitators, family members, healthcare professionals (HCPs) and facilitators themselves found the hope section to be a bit tricky, because of the risk of taking away the patients’ hopes. Italian patients tended to be surprised about the hope section.
Hope is a complex, dynamic and multifaceted phenomenon. A thematic literature review about the importance of hope to the dying patient 3 identified seven main themes that foster hope in these patients. One key factor is having positive personal relationships. Creating a warm, working alliance and the presence of a trustworthy healthcare provider able to make patients feel well cared for are crucial issues in conveying hope to patients, minimizing feelings of hopelessness and isolation. Indeed, feeling loved, being valued and particularly not feeling a burden to others are important factors that generate hope from relationships. 4 The more patients are involved in meaningful relationships, the stronger their sense of hope. “Nobody ever hopes alone, but always with others, and for others.” (Healy, 1992).
Therefore, hope within the ACP process can be assumed to have a broader meaning, which is not confined to what the patient hopes from his medical care plan. Indeed, ACP may open up the opportunity to nurture patients’ trust and hope. By participating in the ACP process, patients may feel more confident in sharing wishes and preferences for future treatment and care in their relationships with HCPs and family caregivers. Over time, the ACP process may generate or strengthen in the patient a hope that finds its meaning in the relationship with HCPs: the hope that this relationship will be maintained and that whatever happens the patient will never be abandoned.
In conclusion, we believe that the ACP process, like every medical practice, finds its core in the encounter between people, where a human being is taking care of another human being.
Links and resources
- ACTION Consortium.
- Follow us on Twitter @ACPinScience
- Read more posts from the ACTION Consortium on the EAPC Blog.
- Contact Francesco Bulli and Team Italy by email.
- The EAPC taskforce on advance care planning.
- Read more posts about advance care planning on the EAPC Blog.
1. Rietjens J.A.C et al. Definition and recommendations for advance care planning: An international consensus. The Lancet Oncology 2017,18 (9), e543-e551.
- McClement S.E. & Chochinov H.M. Hope in advanced cancer patients. European Journal of Cancer 2008, 44, 1169-1174.
- Broadhurst K. & Harrington A. A mixed method thematic review: the importance of hope to the dying patient. Journal of Advanced Nursing 2015, 72(1), 1-32.
- Proserpio T. et al. Hope in cancer patients: the relational domain as a crucial factor. Tumori 2015, 101(4), 447-454.
- Healy T. Hope and action: an interdisciplinary study of the role of hope in moral motivation (Doctoral Dissertation 1992). Rome: Pontifical Gregorian University.
More about the authors …
All authors are based at the Cancer Prevention and Research Institute (ISPO), Clinical and Descriptive Epidemiology Unit, in Florence, Italy.
Francesco Bulli, PSyD is a psychologist and cognitive-behavioural psychotherapist and is currently the Italian teacher and research assistant for Respecting Choices Advance Care Planning program for the ACTION project.
Alessandro Toccafondi, PsyD is a psychologist and psychotherapist who specialises in psycho-oncology. He is currently a research assistant in the qualitative study of the ACTION research project.
Guido Miccinesi, MD is a psychiatrist and epidemiologist. He is author/co-author of more than 180 scientific papers on peer-reviewed journals, mostly concerning supportive care, palliative care and end-of-life care and is the Principal Investigator for Italy in the ACTION research project.
I used to work in a multidisciplinary team linked to well-known London hospital where we supported people with cancer towards the ‘end of life’-and after they had been referred back into the community—-we were pioneers in a way but we found a ‘team approach’ really helped the people with advanced cancer, and also we felt we were supported by our team members …..I am now dealing with a terminal cancer of my own ….. and yearn for time to express my feelings or to feel supported in a similar way…. but these days where I live there is not a similar service….whilst I ‘understand’ that ‘times have changed’, as a patient myself it is difficult to express my needs for various reasons……julia
Dear Julia, thank you for your comment and for sharing your personal experience. It must have been difficult for you not being supported yourself as you did for others in the past.
Your words confirm the important role of caring relationships for dealing with cancer, in terms of a space where professional caregivers are able to listen, to understand, and to try to meet your needs. Guido, Francesco and Alessandro
I don’t know what the answer is……I accept that there is huge pressure on the consultants and others working ‘face to face’ with so many people with their cancer difficulties these days….I would like to start something myself locally but I have to be realistic-my time is limited-I have to deal with my own advancing cancer,and a husband with Alzheimers ……how could the need be met by others???? It is so important–I would be very willing to get people enthused….just wish I had the time left for it to be set up here…I shall see if I can get anyone to be ‘keen’ to help……………
I find it more difficult as time goes by, as I realise the consultant who breaks my bad news, and whose opinion I await this coming Saturday about the results of my latest scan- has no idea how to break bad news…….and I suppose I would like to tell him that…..however……I suppose I have to remember I am a patient and that ‘times have changed’ and that he is probably ,’burned out’…then I feel depressed about how things have detereriorated and that all the hard work we, as a team, put into trying to ,get it right for our ‘clients’ has been superceded by other issues etc., etc.,it all feels a bit depressing…..still, I want to remain an’ incurable optimist ………as other consultants I have met in my cancer journey have managed to maintain a non-judgemental attitude, and I am so pleased….. Julia Franklin