One-page end of life profiles: how do they fit into the advance care planning evidence?

There has been a lot about death and dying in the media recently. From Womans Hour’s How to have a good death to BBC Two’s documentary How to die: Simons choice. Dr Mark Taubert posted a poignant letter about David Bowies death and Paul Kalanithi’s powerful book When breath becomes air is a must read.

Amidst all of this, Max Neill (@maxneill) 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, Helen Sanderson (@HelenHSAUK), Sharon Hudson (@ShazzaHudson) and Philip Ball (@hospicemanager).

Max had used the advance care planning fink cards (that Helen and I 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.

Of course one-page profiles have their admirers and detractors and Max – far more eloquently than I – has discussed some of the issues on his blog.

I have been thinking again about how the fink cards (and other similar ideas such as Grave Talk and Go Wish cards) 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 is also concerned with the way individuals communicate and make decisions (1).

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 (2).

Person-centered care is the status that is bestowed upon one human being by others, in the context of relationships and social being (3). Dying is also reported to be a unique individual relationship with death (4), with arguments that how one interacts with death is dependent upon the context of one’s life (5).

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 (6) and it has been argued that advance care planning is more than a transactional process of legal documents and decisions (7).

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 (8) as well as that advance care planning should be seen as a social and health contextual process (9,10).

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.

Join Max, Sarah, Sharon, Helen and Philip with @patientopinion for a @hospiceuk Twitter chat #maxeolc on Wednesday 2 March 2016, 8 to 9pm GMT, to discuss person-centered advance care planning using one-page profiles and fink cards.

We look forward to seeing you there.

References

1. Sanderson H, Lewis J. A practical guide to delivering personlisation: person centred practice in health and social care. London: Jessica Kingsley Publishers; 2012.
2. Edvardsson JD, Sandman P-O, Rasmussen BH. Meanings of giving touch in the care of older patients: becoming a valuable person and professional. Journal of clinical nursing. 2003;12(4):601–609.
3. Kitwood T. Dementia reconsidered: the person comes first. Buckingham: Oxford University Press; 1997.
4. Wright K. Relationships with death: the terminally ill talk about dying. Journal of marital and family therapy. 2003;29(4):439–453.
5. Graham N, et al. Traditional healers’ views of the required processes for a “good death” among Xhosa patients pre- and post-death. Journal of pain and symptom management. 2013;46(3):386–394.
6. Broom A, Kirby E. The end of life and the family: hospice patients’ views on dying as relational. Sociology of Health & Illness. 2013;5(4):499–513.
7. Fins JJ, et al. Contracts, covenants and advance care planning: an empirical study of the moral obligations of patient and proxy. Journal of pain and symptom management. 2005;29(1):55–68.
8. Sudore RL, et al. Development and validation of a questionnaire to detect behavior change in multiple advance care planning behaviors. PLoS ONE. 2013;8(9):e72465. Available at: http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0072465
9. Lovell A, Yates P. Advance care planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008-2012. Palliative medicine. 2014;28(8):1026–1035.
10. Brinkman-Stoppelenburg A, Rietjens JAC, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliative Medicine. 2014;28(8):1000–1025. Available at: http://pmj.sagepub.com/cgi/doi/10.1177/0269216314526272