Can we convey hope in advance care planning? … Yes we can!

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.

Members of ACTION Team Italy: Left to right: Guido Miccinesi, Alessandro Toccafondi and Francesco Bulli

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.

 References:

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.

2. McClement S.E. & Chochinov H.M. Hope in advanced cancer patients. European Journal of Cancer 2008, 44, 1169-1174.

3. 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.

4. Proserpio T. et al. Hope in cancer patients: the relational domain as a crucial factor. Tumori 2015, 101(4), 447-454.

5. 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.