Recognising the last year of life: The 'Surprise Question' AND end-of-life trajectories
1. Consider the people currently in your care. What are some of the challenges you might face if you were to ask the surprise question about all of the patients you care for? The people I care is from a background of chronic kidney failure on Hemodialysis ,you can put the patient with dementia and coming for dialysis .If that more relating to the first assignment you have done . Also please refer Supportive care of patient with chronic kidney disease, in Contemporary nephrology nursing By Mozahn A E IN 2017.
2. Do the end-of-life trajectories described by Lynn & Adamson (2003) make sense to you when you consider the people you care for? Please respond to the topics above as two separate posts.
chapter 1 Who is the palliative care patient? and chapter 3 Where is palliative care provided and how is it changing?
Below is the ﬁrst opportunity for you to undertake a learning activity as part of your course work. You may choose to include this activity as part of your portfolio (Assessment 2) at the end of semester.
Consider the context of where you work and the needs and experience of the people you care for.
1. Consider how changing patterns of illness and disease burden in our communities, changes in social and community values and attitudes towards death and dying are inﬂuencing how people experience the last year or so of their life.
2. Do the end-of-life trajectories described by Lynn and Adamson (2003) featured in Chapter 1, p. 9 make sense to you when you consider the people you care for?
3. How else might we decide when someone is 'ready' for palliative care?
4. In your portfolio based on the activity above, you might brieﬂy reﬂect on the considerations given to determining who is the palliative care patient you see in your day-to-day practice and do these correspond to the typical dying trajectories described by both Lynn & Adamson (2003).
5. Describe the journey of a person you have cared for that resembles one of these trajectories.
Module 1: Part 2
Modern medicine has transformed our lives. People live longer, live healthier and survival from common illness has improved. As we examined in the introduction however, the pattern of our individual journeys towards the end of our life has also changed.
Atul Gawande is a general and endocrine surgeon at Brigham and Women's Hospital and Professor at Harvard University. His book Being Mortal: Medicine and what matters at the end was published in 2014.
Professor Gawande was in Australia for the Writers Festival in 2015 and was interviewed by Norman Swan on Radio National. Begin by reading a Chapter of Gawande's book (Chapter 2 - see list of readings outlined below) and then listen to the radio interview with Norman Swan, if you haven't done so already.
We know that even if clinicians do recognise the fact that a person is approaching end of life, they are often reluctant to share this information with the person and/or their family. Quality care is not simply a matter of sharing prognosis; rather, quality care - and care that families remember - is how we share our understanding of their situation, probable life expectancy (even if we can't be certain), what we know about the impact of their disease on quality of life and the pros and cons of any proposed treatment.
The Brisbane Times published a commentary on the 5th July 2016 that discussed why some doctors ﬁnd it hard to tell patients how bad their prognosis really is. In this commentary, based on an academic article published by Epstein et al in the Journal of Clinical Oncology (2016), the author describes some of the challenges faced by both patients and clinicians. Both these pieces are included in your readings for this module and can be found here;
Why doctors won't always tell you how bad the prognosis is, Brisbane Times ! and Discussions of Life Expectancy and Changes in Illness Understanding in Patients With Advanced Cancer !.
There are a number of screening tools that can be used to recognise people who may be approaching the end of their life (more focus provided in module 2). An Australian study ((Cardona-Morrell & Hillman (2015) developed a tool that can be used in acute care hospitals for identifying the dying patient, for example. The article based on this is part of your reading list below. Other tools (for example, see Gold Standards Framework Prognostic Indicator Guidance) have been designed to be used in primary care settings; please see the Gold Standards Framework !
As well, there are key strategies for end-of-life care
Caresearch Palliative Care Knowledge Network is a key resource for palliative care clinicians and everyone providing care for people at end of life. The link below will take you to key messages related to end-of-life care where it is acknowledged how important it is to recognise in advance that a person may be entering the end-of-life phase so as to allow them to make meaningful changes to their goals of care.
Understanding a person's goals of care helps clinicians to better plan ahead to meet their care needs and to support them to die well. Caresearch End Of Life Care !
The Australian Government Department of Health National Palliative Care Strategy 2018 was developed for use by all Australian governments, as well as organisations and individuals, in guiding the improvement of palliative care across Australia so that people aﬀected by life-limiting illnesses get the care they need to live well. The Strategy provides a shared direction and an authorising environment for the continual improvement of palliative care services in Australia.
The National Palliative Care Strategy 2018 !
In England, the National Health Service (NHS) adopted a national end-of-life care strategy in 2008 with the intention of identifying and meeting the needs of people who are living with dying. Development of this ﬁrst national strategy has resulted in new indicators of quality and care processes. You might like to look over this UK programme and compare what England is doing to improve end-of-life care.
We have now successfully completed Module 1 of this unit. Over the past couple of weeks we have asked you to explore the changes in how we approach and reach the end of our lives in modern, contemporary societies, such as Australia. Some of these changes are due to the changing patterns of illness and disease and improvement in life expectancy related to advances in medical care and the availability of treatment options.
We have been introduced to the idea of common trajectories or pathways towards the end of life and challenged to think diﬀerently about what it means to be mortal. We have considered Australian and other international resources to reﬂect on the extent to which services in Australia are currently organised to meet the needs of a rapidly increasing number of people (the so-called 'baby-boomers') who are either approaching or reaching the end of their life.
I hope that you can see how critically important it is that we learn to recognise the point in a person's life when we need to adapt our approach to a person's care to be more closely aligned with their values, beliefs and personal goals.
In the next Module you will learn about ways that we can respond through appropriate assessment and intervention to the commonly experienced, holistic needs of people in the last year of life.
1. The question:“Would you be surprised if this patient died in the next six months, or a year?" was developed by Joanne Lynn (2005) as a method to identify patients who might beneﬁt from palliative care. It has been adopted by health care professionals across specialisations as a simple way of screening for patients who might beneﬁt from care planning as they approach the end of their life. Studies have shown that a physician's response to the surprise question is a signiﬁcant prognostic indicator -- that is, a predictor of a person's life expectancy -- in cancer and kidney failure, as well as in a large primary care practice.
2. Please read the article 'Using the Surprise Question to Identify Those with Unmet Palliative Care Needs in Emergency and Inpatient Settings: What do Clinicians Think?' (Haydar, Samir et al. 2017).
3. The two discussion board topics outlined below will give you the opportunity to engage with the unit content, your peers and the module facilitator on recognising the last year of life. We encourage you to engage as much as possible with the discussion boards, to optimise your learning outcomes and to ensure that you have a selection of work to chose from when you submit your portfolio at the end of semester.
1. 'The Surprise Question' - what do you think? Consider the people currently in your care. What are some of the challenges you might face if you were to ask the surprise questions of yourself for everyone you cared for? What might be some of the beneﬁts?
2. Respond to another student who has answered 'The Surprise Question' who works in a diﬀerent clinical environment to you; would you answer and assess the people they are caring for in the same way? Why? What are the diﬀerent outcomes for the individual and their family that you think might arise?
3. Chapter readings 1 and 3 in part A of this module, including Lynn & Adamson (2003), introduced us to Trajectories of chronic illness and the trajectories of decline experienced by older people who are sick enough to die. Which do you encounter most commonly in your professional practice? Do you believe this has changed over time in your clinical area (in the past 10, 20, 100 years)? Can you ﬁnd any literature to support the change in trends?
• In your experience, do these reviews and trials relate to what you see in your everyday practice?
• If people's preferred place of care is home, can we match this with appropriate care?
• What are the implications for receiving care at home for both nursing care and families?
• Look at Chapters 15 and 16 in this volume. Consider using advanced care plans to record both patient and family wishes.
• How else can nurses record or assess family wishes? Look at Chapter 12 for other ways to do this.
Who is the palliative care patient?
• Consider the potential benefits of a greater consensus around who the palliative care patient is.
• Can you think of benefits for patients, the public generally, nurses and other professionals?
• Make a list, then compare it with what follows.
It should be apparent that uncertainty over who the palliative care patient is can lead to undesirable conseq,uences, such as limited patient choice and delay in accessing appropriate care. Some of the benefits of better defining the palliative care patient might be:
• ensuring that palliative care can be provided to all those patients for whom it would be appropriate;
• enabling palliative care nurses and other practitioners to develop their practice to better reach those who need them most;
• supporting ethical decision-making over the withholding or withdrawal of inappropriate interventions;
• helping agree ceilings of care and promoting realistic medicine;
• creating intelligent local, national and international policy to address the needs of those who fall under the title of 'the palliative patient';
• effectively communicating with and educating the public about what palliative care is and who should be accessing it;
• enabling patients to make infom1ed decisions about their future care;
• better defining study populations, enabling consistent research which produces transferable findings.
The task is daunting, but this chapter will consider the three main criteria by which the palliative patient might be defined (namely, diagnosis, prognosis and level/nature of need). It will also explore other potential criteria such as suffering and consensus.
• Think about the concept of waiting until someone has an agreed period of time left to live before introducing palliative care. How feasible is such an approach?
• How reasonable do you think it is to withhold palliative care until that point?
• How else might we decide when someone is 'ready' for palliative care?
The surprise q,uestion, while having its limitations, has the advantage of being a simple and easily applied tool for triggering the commencement of palliative care. Other specific triggers have been proposed and include:
• complex or persistent symptoms such as pain or breathlessness;
• high levels of unplanned hospital use;
• multiple co-morbidities;
• anorexia, malnourishment and weight loss;
• need for supplementary feeding or ventilatory support;
• diagnosis of a new, life-limiting condition;
• high levels of palliative care needs as indicated by an appropriate screening tool.
What should be becoming clear is that there is no easy way to identify or define the palliative care patient simply on the basis of prognosis (Mitchell et al. 2013). Indeed, Mitchell et al. (2016) have suggested that an over-emphasis on accurate death prediction may not be serving potential beneficiaries of palliative care well. A more appropriate approach might be to use evidence of increasing disease burden to trigger holistic needs assessment, proactive consultations with patients and their families and anticipatory care planning (Rocker, Downar and Morrison 2016). The remainder of this chapter will examine these issues.