More 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. And if you’re attending the 10th EAPC World Research Congress this week in Bern, come along to the ACTION presentations . . .
Left to right: Branka Červ, Hana Kodba Čeh and Urška Lunder.
Hana Kodba Čeh, a psychologist currently working as a researcher with ‘Team Slovenia’, discusses the recent evidence on various impacts of advance care planning on end-of-life management in a broader sense. Together with Branka Červ, nurse, and Urška Lunder, MD, she discusses advance care planning in Slovenia and summarizes some key points from their review article recently published in Current Opinion in Supportive and Palliative Care. A brief discussion on Slovene situation opens this short report.
Advance care planning (ACP) is still an unknown concept for most people in Slovenia, although a legal document as an advance directive was introduced in 2008. People can express their refusal of resuscitation or treatments to inform their future care. It is also possible to legally appoint a person to make such decisions on a patient’s behalf. Moreover, it seems that most physicians regard an advance directive as a valuable tool when asked specifically. Even so, observation of actual practice in Slovenia reveals that patients rarely decide to follow the process to its completion. Lengthy registration requirements and lack of public discourse can be major barriers. In settings where ACP is part of palliative care services (a few hospitals and homes for the elderly), the location of patients’ death according to their wishes was more often observed. It was found that ACP might impact better control of symptoms and higher satisfaction of family members. Currently, our collaboration in the ACTION project is producing a legacy of knowledge and practical tools for conducting ACP conversation for patients by different healthcare professional groups.
Now let us list some important points we raised in the article, based on recent research and then discuss them in more detail:
- Completion of advance directive forms, hospital admission rates and patients’ and families’ views and experiences are the most common outcome measures in recent ACP research.
- Recent, mostly descriptive studies on ACP explored its impact on specific groups of patients, their families, settings, staff, and countries.
- It is not yet clear who should best conduct ACP and when.
- High-quality evidence of ACP impact is urgently needed due to high palliative care needs in future projections.
Who and where?
Since the beginning of ACP development, research on all kinds of ACP impact has been increasingly produced almost all over the world. Despite increased attention to the concept of ACP, it is difficult to convert evidence into a consistent and reliable ACP model covering all patient groups in different healthcare settings.
The reasons for delays in implementation of ACP are multi-layered. Solutions are required on a system-level. Looking at the evidence drawn from recent studies, we identified discomfort with death and dying, confusion of role responsibilities and lack of coordinated care among settings as most important barriers for end-of-life discussions and decision-making. Whose responsibility is ACP anyway?
Ideally, ACP is a team effort of everyone involved in the patient’s journey across a variety of settings during the course of illness. Nevertheless, some feel that general practitioners are core providers since they are well placed between the ACP process and the patient’s interpersonal context (e.g. Waller et al., 2017). Others view it as a process that is not separate from elements of specialty care, sometimes including complex aspects of medical treatment for specific patient groups. Respiratory specialists are recognized as crucial in providing ACP in patients with chronic obstructive pulmonary disease (COPD) since they can help patients to explore future treatment options about mechanical ventilation, intubation and tracheotomy.
An Italian study published last year had quite surprising results regarding the retention of the information following discussions with a respiratory specialist. It turned out that more than half of the patients did not remember information regarding end-of-life conversations held a day before, even though it concerned repeated conversations, and explanations were given in simple language (Carlucci et al., 2016).
Keeping in mind that it is hard to consider abstract and hypothetical events, preparing patients and surrogates to make in-the-moment decisions seems to be a step forward in helping them to make truly informed decisions when they arise (e.g. Sudore & Fried, 2010).
References and resources
Weathers E, O’Caomh R, Cornally N, Fitzgerald C et al. Advance care planning: A systematic review of randomized controlled trials conducted with older adults. Maturitas 91, 2016; 101-109.
Carlucci A, Vitacca M, Malovini A, Peirucci P, et al. End-of-life discussion, patient understanding and determinants of preferences in very severe COPD patients: a multicentric study. COPD: Journal of chronic obstructive pulmonary disease2016; doi: 10.3109/15412555.2016.1154034.
Read the full article in Current Opinion in Supportive and Palliative Care
This post relates to ‘Impacts of advance care planning on end of life management’ by Lunder U, Červ B, Kodba-Čeh H, published in Current Opinion in Supportive and Palliative Care, 2017; 11 (4). (You will need a subscription to read this article).
Links
- Contact Team Slovenia by email.
- ACTION website.
- Follow us on Twitter @ACPinScience
- Read more posts from the ACTION Consortium on the EAPC Blog.
- Read more posts about advance care planning on the EAPC Blog.
Members of the ACTION Consortium will be presenting at the 10TH EAPC World Research Congress …
- Ida Korfage: Involvement in Medical Decision-making by a Cohort of Patients with Advanced Cancer across Six European Countries, the ACTION study, Friday May 25, 14.45-15.00.
- Lea Jabbarian: Relative Validity of an Emotional Functioning Short Form based on the EORTC Computerized Adaptive Testing Item bank in the international ACTION study, on Saturday May 26 at 11.00-11.15.
- Glenys Caswell: Qualitative Exploration of Advance Care Planning Conversations: Experiences from the ACTION Study, Saturday May 26 at 09.30-9.45.
- Check out the latest programme for the 10th EAPC World Research Congress here.
EAPC Blog 
This is a great article thanks Hana. There are so many aspects to Advance Care Planning and I don’t think (I may be wrong) that the health care system appreciates that other systems such as work and other responsibilities contribute to this feeling of being overwhelmed and confused in the midst of trying to make major life decisions re care now and into the future. Also, I know some GPs have never asked the ill person if there is another person living with them at home … assumptions about current living conditions, medications, documentation pertaining to Wills etc, who is actually next-of-kin etc are often not picked up in the complexity of peoples’ lives (blended families etc). There is also the issue of re-adjusting documentation when a person has made an ACP and is admitted to hospital where NFR Orders are explored outside of any existing ACP documentation. When the person is discharged back to their place of living (residential care, home etc) no further review is undertaken as to any changes that may need adjustment to the ACP documentation. In my experience, with ageing parents, there is a need (here in Australia at any rate) for a family member to be retired to deal with all the co-ordination of information, care and support etc needed to ensure the ill person is well attended to. If not, it can be a nightmare to manage work, ill family members, illness itself, and carer needs … quite apart from trying to make decisions about end-of-life wishes. A lot more work needs to be done (as always!). And then there’s the needs of the carer/s … another whole issue!! Thanks for your insights.
Dear Mary. Thank you for your comment. As you are experiencing, it’s not always obvious how to do high-quality ACP in various and complex settings. Unfortunately, many people do not get the care they need. It is hard to find a way around complex systems and associated challenges. And there are other factors like political and economic conditions, legal requirements… Care is correspondingly varied. Improving coordination and cooperation seems to be of great importance. ACP is at an early stage in Slovenia but we have a group of enthusiast dedicated to move things forward :). Best of luck with everything, with kindest regards, Hana