One Page End of Life Profiles: How do they fit into the advance care planning evidence?
29 February 2016 | By Helen Sanderson
Join us for a Tweet chat on Wednesday 2nd March 2016:8-9pm GMT #maxeolc
Sarah Russell: Head of Research and Clinical Innovation: Hospice UK @learnhospice
There has been a lot about death and dying recently. From @BBCWomansHour How to have a Good Death http://www.bbc.co.uk/programmes/b06ztzwn to @BBCTwo How to Die: Simons choice http://www.theguardian.com/tv-and-radio/2016/feb/11/how-to-die-simons-choice-review-beautiful-film-assisted-dying?CMP=twt_gu . @DrMarkTaubert posted a poignant letter about David Bowies death http://www.huffingtonpost.com/entry/david-bowie-son-thank-you-letter_us_569d4cd8e4b00f3e9862801c and Paul Kalanithi’s powerful book When breath becomes air is a must read http://www.nytimes.com/2016/02/14/books/review/the-good-death-when-breath-becomes-air-and-more.html?_r=0
Amidst all of this @maxneill #maxeolc quietly shared his thoughts about maximizing choice and control through his One-Page Profile for end of life. The idea of One-Page Profiles has been supported by myself, @HelenHSAUK @ShazzaHudson and @hospicemanager. Max had used the @finkcards advance care planning cards that Helen and I had developed last year and used them in his conversations with his wife. As a staunch advocate of person-centered practices Max had taken this forward to design and write his own One-Page Profile. http://peoplethinkingaction.blogspot.co.uk/2016/01/maximising-choice-and-control-in-end-of.html. Of course One-Page Profiles have their admirers and detractors and Max far more eloquently than I discusses some of the issues here http://peoplethinkingaction.blogspot.co.uk/2013/11/one-page-profiles-just-garnish.html .
I have been thinking again about how the Fink cards (and other similar ideas such as Grave Talk https://www.chpublishing.co.uk/books/9780715147030/grave-talk-cards and Go Wish cards http://www.codaalliance.org/ ) and One-Page Profiles fit into the advance care planning evidence and what their contribution to person-centered care is.
I think the contribution is this. Person-centered care is not only about knowing what is important to a person but also concerned with the way individuals communicate and make decisions (Sanderson and Lewis 2012). Advance care planning is more than decisions and documents; it is about understanding and sharing for a moment the context of someone else’s dying experience and how they talk about it. In other words, seeing the person behind the disease (Edvardsson et al. 2003).
Person-centered care is the status that is bestowed upon one human being by others, in the context of relationships and social being (Kitwood 1997). Dying is also reported to be an unique individual relationship with death (Wright 2003) with arguments that how one interacts with death is dependent upon the context of one’s life (Graham et al. 2013). Dying therefore takes place within the context of relationships to others not just individually focused advance care planning decisions and documents. The importance of relational aspects such as family dynamics and social networks in end of life is already described (Broom and Kirby 2013) and it has been argued that advance care planning is more than a transactional process of legal documents and decisions (Fins et al. 2005).
The Fink cards and the One-Page Profiles were motivated by person centered practices and focusing on peoples’ experiences and stories of what mattered most to them as they lived with, talked about or planned for dying. They aim to trigger conversations and to understand the back story of peoples’ lives before decisions are made. Much of the thinking behind the cards was motivated by health behavioral change models (see Sudore et al.2013) as well as that advance care planning should be seen as a social and health contextual process (Lovell and Yates 2014; Brinkman-Stoppelenburg et al. 2014).
The One-Page Profiles and Fink cards therefore are about maximizing the way to have conversations by giving voice to individuals’ thoughts, contemplating end of life and considering specific decisions. They do not replace formal documents such as Advance Decision to Refuse Treatments, Do Not Attempt Cardio Pulmonary Resuscitation or Treatment Escalation Plans. What they are, is one way to bridge the gap between humanity and impersonal systems by focusing on the person rather than the process, policy or paperwork. For example, using Fink advance care planning cards and One-Page Profile opens up discussions enabling the use of formal processes and documentation.
Here are two examples of how we are exploring using them:
Talking about death is difficult and it’s an annual conversation for me and my mum.
Last year she decided that organ donation was not for her. This year she has changed her mind. She is thinking differently about who she wants involved in organising her funeral, however she is consistent in where she wants to die – at home.
Mum neither believes that she is old (she is 81), nor that she will die. She does not really believe that she is immortal, but as there are no signs that this is imminent, talking about death, in her view, is morose and unnecessary. This year we built on her existing one-page profile to develop a version that is focussed on the end of her life. It is reassuring for us as a family to have a summary of her wishes, as well as the more detailed ‘Living Well and planning for the end of your life’. I hope that we are completing this annual routine – for another decade at least, and finishing it with a cup of tea and a cake at our favourite garden centre.
Fink cards are a much easier way of starting a conversation. You can sit with your family and take turns to pull out a card, and then have a conversation about the question on the card. It works out you might only end up discussing two or three of the questions, as the conversations can quite quickly become in depth and cover lots of ground. The first time I tried this with my wife, we had been talking about the very first card for about 20 minutes, and it felt like we were really getting somewhere, then my phone rang: it was the hospital who needed me to come back in for another scan! I felt this showed how easily medical priorities can interrupt our personal priorities
Join Max, Sarah, Sharon, Helen and Philip with @patientopinion for a @hospiceuk Twitter chat #maxeolc on
Wednesday 2nd March 2016:8-9pm GMT to discuss:
Person centered advance care planning using one page profiles and fink cards.
We look forward to seeing you there.
Brinkman-Stoppelenburg, a., Rietjens, J. a. & van der Heide, a., 2014. The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine, 28(8), pp.1000–1025. Available at: http://pmj.sagepub.com/cgi/doi/10.1177/0269216314526272.
Broom, A. & Kirby, E., 2013. The end of life and the family: hospice patients’ views on dying as relational. Sociology of Health & Illness, 35(4), pp.499–513. Available at: http://doi.wiley.com/10.1111/j.1467-9566.2012.01497.x.
Edvardsson, J.D., Sandman, P.-O. & Rasmussen, B.H., 2003. Meanings of giving touch in the care of older patients: becoming a valuable person and professional. Journal of clinical nursing, 12(4), pp.601–609.
Fins, J.J. et al., 2005. Contracts, covenants and advance care planning: an empirical study of the moral obligations of patient and proxy. Journal of pain and symptom management, 29(1), pp.55–68.
Graham, N. et al., 2013. Traditional healers’ views of the required processes for a “good death” among Xhosa patients pre- and post-death. Journal of pain and symptom management, 46(3), pp.386–394.
Kitwood, T., 1997. Dementia Reconsidered: The Person Comes First, Buckingham, UK: Oxford University Press.
Lovell, A. & Yates, P., 2014. Advance Care Planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008-2012. Palliative medicine, 28(8), pp.1026–1035.
Sanderson, H. & Lewis, J., 2012. A Practical Guide to Delivering Personlisation: Person Centred Practice in Health and Social Care, London: Jessica Kingsley Publishers.
Sudore, R.L. et al., 2013. Development and Validation of a Questionnaire to Detect Behavior Change in Multiple Advance Care Planning Behaviors. PLoS ONE, 8(9), p.e72465. Available at: http://dx.plos.org/10.1371/journal.pone.0072465.
Wright, K., 2003. Relationships with death: the terminally ill talk about dying. Journal of marital and family therapy, 29(4), pp.439–453.
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