Welcome Who am I? Why am I interested in this area?
This is an area with many questions and few answers. I am here to share my thoughts and hear yours. Needs more research - opportunities for us all. PeolsP - who, what, why, where, when?
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Much of this talk is covered more thoroughly in this chapter in the latest ERS monograph, published earlier this year. Unfortunately it is not open access, but you may be able to access through Athens, or ask your department to buy a copy – the book is entirely focused on COPD, with other chapters including: screening and case finding; COPD co-existing with other conditions such as asthma and bronchiectasis; the importance of physical activity; how to assess the benefits of PR… etc
Need to start by being clear on what we are talking about when we talk about ACP. Advance statement: written records or oral expressions of future preferences for care and treatment, often a general reflection of a person’s hopes, beliefs, values and wishes for care. Used to help inform decision-making and an individual’s best interest when the person has lost capacity. Not legally binding in the same way as advance decisions. Advance decision to refuse treatment: relates to a specific refusal of medical treatment and specific circumstances. Can be made by someone >18yrs who has mental capacity. Relates to refusal of a specific treatment in specific circumstances. , usually including the statement ‘even if life is at risk’, signed and witnessed Comes into effect if the individual loses capacity. LPA: A statutory form of power of attorney created by the Mental Capacity Act (2005). Anyone who has capacity can choose a person (an ‘attorney’ to take decisions on their behalf, regarding their health and welfare, if they subsequently lose capacity.
There is limited value to doing ACP if the conversation is not captured and shared with other health care professionals. One way to do this is through an EPaCCs, of which co-ordinate my care is one example, used in London. You may have used this yourself.
Great reason to celebrate. However, care is patchy. Postcode lottery. Not equal access or quality across diagnoses. Is this the story of our COPD patients? Evidence suggests they get a bad deal. We need to identify patients who may benefit in order to direct care/services – including advance care planning. ACP is one part of palliative care.
According to bereaved informal caregivers, COPD patients in the last year of life experience breathlessness (94%) anorexia (67%), pain (77%), cough (59%), insomnia (65%), confusion (33%), and low mood (71%) Other studies have found a significant symptom burden, particularly breathlessness, fatigue, and limitation of daily activities often leading to social isolation. Anxiety, panic and depression are also prominent and under-treated. However, individual trajectories vary widely, along with quality of life and health-related quality of life . Patients with advanced COPD have similar treatment preferences to patients with lung cancer but are more likely to undergo invasive interventions near the end of life and less likely to complete advanced care planning or access specialist palliative care services. Informal carers take on a significant burden of emotional and practical support and have high rates of post-bereavement depression.
Habraken JM, ter Riet G, Gore JM, Greenstone MA, Weersink EJM, Bindels PJE, et al. Health-Related Quality of Life in End-Stage COPD and Lung Cancer Patients. J Pain Symptom Manage. 2009 Jun;37(6):973–81. Gore JM, Brophy CJ, Greenstone MA. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax. 2000;55(12):1000–6 Edmonds P, Karlsen S, Khan S, Addington-Hall J. A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer. Palliat Med. 2001;15(4):287–95.
I could have also put extending life on this list. The initiation of palliative care must not be seen as an end to treatment, or as an inevitable start of the end of life phase. In fact a palliative care approach can not only enhance quality of life but may extend duration of life. eg NEJM Temel early palliative care in lung cancer study, and Higginson (Cambridge) Breathlessness clinic (incl ACP) including COPD patients.
Many clinicians fear removing hope, and we know that hope is vitally important to many patients. Reassuringly, a study in patients with end stage renal disease explored this and found it not to be the case. Davidson & Simpson (2006) found in their qualitative study that patients’ hopes were highly individualized and were shaped by personal values. Participants identified hope as central to the process of advance care planning. More information earlier in the course of the illness focusing on the impact on daily life, along with empowerment of the patient and enhancing professional and personal relationships, were key factors in sustaining patients’ ability to hope. The reliance on health professionals to initiate end of life discussions (since this did not happen early or often enough) and the daily focus of clinical care were seen as potential barriers to hope. “Current practices concerning disclosure of prognosis are ethically and psychologically inadequate in that they do not meet the needs of patients.”
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early palliative care for patients with metastatic non–small-cell lung cancer. N Engl J Med. 2010;363(8):733–42. Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, et al. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med [Internet]. 2014 Oct Davison, S. N, and C. Simpson. “Hope and Advance Care Planning in Patients with End Stage Renal Disease: Qualitative Interview Study.” BMJ 333, no. 7574 (October 28, 2006): 886–0.
We have seen that there are many reasons to think that ACP . ACP can happen at any time and anyone should have the opportunity to discuss issues relating to prognosis and end of life planning at any point in their disease. However, we know patients wait for healthcare professionals to bring it up, and many HCPs want to start these discussions ‘when the time is right’. At diagnosis may be too early, and not of immediate relevance to the patient. But end-of-life is too late, as plans cannot be enacted and choices are limited.
So why is it difficult to identify patients with COPD who are nearing the end of life?
The natural history of COPD follows the organ failure trajectory, with a gradual decline in function punctuated by acute exacerbations, making outcome and prognostic assessment challenging in individual patients. Stewart and McMurray (2002) have described ‘prognostic paralysis’ in which clinicians faced with uncertain disease trajectories (particularly in COPD, cardiac failure and dementia) hesitate and delay considering end-of-life-issues, leading to failure to offer patients a palliative care approach that could in fact enhance quality of life.
Stewart S, McMurray JJV. Palliative care for heart failure. BMJ. 2002 Oct 26;325(7370):915–6.
Get into groups and discuss the 16 prognostic markers in front of you. Pick your top three, and nominate someone to feedback to the whole group the highlights of your discussion, and your rationale for choosing those three.
Discuss the prognostic markers groups picked. Bring out: Clinician prediction (and how poor this is, particularly in non-malignant disease) Multivariate scores such as BODE Patient reported measures eg breathlessness, QoL – as good if not better than ‘objective’ measures
A limitation of many existing studies is that they have been conducted in specific populations. The findings are therefore not applicable to the large population of patients with moderate to severe COPD in the community. The analysis of data from electronic health record databases of routinely captured data offers an opportunity to create and validate models which could potentially identify patients in the last year of life. Let’s hope so for the sake of my PhD viva!
The limitations of data: Specific populations Markers not available in community Heterogenous disease
What is missing on this list?
For now, these would be good concepts to use when thinking about who to start ACP with.
A challenge is to differentiate end-of-life care, focused on the last weeks and days of life, from palliative care, a much longer term approach to care that can begin at any point in the trajectory of a life-limiting illness and can co-exist with other ‘active’ or disease-orientated treatments. It is particularly important to make a distinction between these two terms in the context of COPD, as the time-frame over which a patient may benefit from a palliative care approach may be several years. We must put ACP within this model, maintaining hope for our patients and helping them make choices that make sense for them.
Planning for the future - when does the future start?
Planning for the future – when does
the future start?
Dr Laura-Jane E Smith
Respiratory SpR, NorthEast London
DISCLAIMER: The views and opinions expressed in this presentation are those of the authors and do not necessarily represent
the views and policy of PLAN(Pan London Airways Network).
The Challenge of Palliative Care. Smith, LJE and
Quint JK, in: Controversies in COPD, Publisher:
European Respiratory Society. Editors: Antonio
Anzueto, Yvonne Heijdra, John R Hurst, Chapter:
Symptom burden (breathlessness, anorexia, pain, cough, insomnia, confusion,
fatigue, low mood, anxiety, panic)
Invasive interventions near the end of life
Advance care planning
Access to specialist palliative care services
Habraken JM et al. 2009
Edmonds P et al. 2001
Gore JM et al 2000
COPD Lung cancer
HOW CAN WE IDENTIFY PEOPLE
NEARING THE END OF LIFE?
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