What is the role of advance care planning and timing of referral for patients with lung cancer?

From Cancer Guidelines Wiki


Palliative care is appropriate for all people facing life threatening disease, though in practice in Australia, most services are directed toward people with life limiting/terminal disease. While most studies reviewed to create the palliative care section of this guideline are derived from studies relating to patients with NSCLC, it is likely that the themes and concepts are broadly applicable to those with SCLC.

Metastatic lung cancer is a leading cause of death. In 2014, it was the leading cause of cancer deaths in Australian men and women and was responsible for the deaths of 8,251 Australians, making it the fourth leading cause of death.[1] The prognosis after the diagnosis of stage IV (metastatic) lung cancer has been estimated to be less than one year.[2] Due to the high mortality rate, the rapidity of disease progression which is sometimes seen, as well as late presentation and co-morbidities, questions regarding timing of referral to palliative care along with questions regarding advance care planning are highly relevant to this patient group.

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Timing of referral

There has been debate over the optimal time of referral to palliative care for patients diagnosed with advanced cancer, including patients with stage IV lung cancer. Temel et al[2] conducted a randomised controlled trial (RCT) to answer this question comparing early referral to palliative care (within eight weeks of diagnosis of metastatic NSCLC) to usual care (including referral to palliative care when requested by patient, family or treating oncologist). Patients who were referred early to palliative care had better quality of life (QOL) assessed 12 weeks after referral, and the improvement in their QOL was both statistically and clinically significant. In addition, patients referred to palliative care early were more likely to have their wishes with respect to resuscitation documented, had less depression and were less likely to receive aggressive care at the end of life . Furthermore, those who were referred early lived an average of 2.7 months longer than those who received usual care. A survival benefit for patients with lung cancer referred to palliative care earlier was also found in a study which extracted data from a large US database and found longer survival for patients referred to hospice than those not referred.[3]

In contrast a RCT conducted in Australia found a different result.[4] This study included patients who had a range of different advanced malignancies (including lung cancer) and compared the effect on QOL and mortality of early referral to a Palliative Care nurse to usual care.[4] In the early referral group, there was a trend toward decreased quality of life and a statistically significant decrease in mortality.[4] Patients in this study received a relatively ‘low dose’ of palliative care involvement compared with the study by Temel et al [2] quoted above. Additionally, despite randomisation, there were some important differences between the groups at baseline which may explain some of the results. The authors suggest that the change in QOL may partially be explained by patients in the intervention arm being more comfortable disclosing symptoms and/or those in the control arm maintaining denial as a coping mechanism for longer.

Overall, the preponderance of evidence remains in favour of early referral to palliative care, but other factors, including the ‘dose’ of palliative care may be important.

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Advance care planning

Advance care planning (ACP) is a patient centred process in which patients, in consultation with family members and health care providers, make decisions regarding their future health care known should they later become incapable of expressing such preferences.[5] The process of advance care planning usually occurs over a series of conversations, rather than being a single 'one off' event. Reviewing patients priorities and preferences as their illness progresses is almost always appropriate.[6] Given the poor prognosis of stage IV inoperable lung cancer, such discussions would appear to be highly relevant. This type of discussion requires effective communications skills, and guidance regarding these skills may be found in some excellent Australian clinical practice guidelines.[7]

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Efficacy and acceptability of advance care planning

One randomised controlled trial has assessed the efficacy and acceptability of ACP in Australian populations.[5] This study randomised elderly, hospitalised inpatients with non malignant disease to an ACP intervention facilitated by a specially trained health care professional. It found patients who completed ACP were more likely to have their preferences known and respected at end of life. Importantly, patients who were randomised to the ACP arm of this trial reported higher levels of satisfaction with care for the inpatient episode in which the ACP occurred. In addition, lower levels of distress and depression were reported by family members of patients who died after completing ACP than those who did not participate in ACP. Qualitative research where patients were interviewed regarding their experience of undertaking ACP discussions confirms that the process of ACP is acceptable to patients.[8]

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Need for advance care planning

Good health care can only be achieved when clinicians and patients share a common understanding of the patients' illness, prognosis and preferences. Information regarding prognosis is highly valued by patients and their families,[9] however, with respect to lung cancer, clinicians may not adequately communicate prognosis.[10] Patients with other solid malignancies tend to overestimate their prognosis, however this issue has not been addressed in patients with lung cancer.[11] In addition, patients often overestimate the probability of success of aggressive interventions like CPR and may not understand the role of such interventions in the context of their advanced cancer.[12][13][14] Accurate prognostic understanding may be associated with a decreased desire for CPR and/or intensive care admission and an increased preference for hospice care.[15]

A minority of patients with advanced lung cancer have had discussions regarding resuscitation status with their clinicians.[16][17] A substantial proportion of those who have not discussed their preferences would like to do so, but cite lack of initiation of these discussions by health care practitioners as a major barrier,[18][13] and may rely on the responsible physician and/or the health care system to initiate such discussions.[19] When patients have not completed an advance care plan their next of kin may not fully understand their wishes.[13] In contrast, when advance care directives have been completed, bereaved family members report it was helpful in guiding care prior to death.[20] In addition, there is a mismatch between doctors' perceptions of patients' preferences with respect to CPR, as well as other life sustaining interventions, and their patients’ actual preferences.[21][22] Finally, there is evidence to suggest that referral to palliative care at the time of diagnosis increases the likelihood of documenting patients' wishes with respect to resuscitation and avoiding aggressive care at end of life.[2]

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Process of advance care planning

Initiating and facilitating discussions with patients and their families is a complex communication task for which some excellent Australian clinical practice guidelines exist.[7] It is important to emphasise that ACP is a process rather than a single conversation, and the involvement of loved ones is almost always appropriate.[6] Importantly, patients and their families may not always recognise when the topic of end of life or advance care planning has been raised,[23] so it may be necessary to sensitively check the patients’ and their families understanding the issue in subsequent conversations.

A systematic review examining patient preferences with respect to end of life discussions found that patients and their care givers want honest information delivered with sensitivity and hope, but without jargon by a trusted health professional.[9] They value compassion, care and empathy in the delivery of this type of information.[9] However, the information needs of patients and their care givers may vary over time, with care givers generally wanting more information as time proceeds.[9] Patients may change their mind about how much information they want about their illness over time, with some wanting more and some wanting less information as their illness unfolds.[24] In addition, patients preferences regarding who should control decision making (ie doctor controlled, shared or patient controlled) may fluctuate over time.[24] These changes may be unpredictable and thus repeatedly exploring these preferences may be appropriate. [24][9]

Patients may need time to process the idea that end of life is approaching and doctors may delay discussions until there is definite evidence of medical deterioration, by which time, end of life may be quite close.[23] Furthermore, there are cultural factors which may impact on information needs and some patients with lung cancer experience stigma which complicate communication and information needs.[25]

There is marked variation between individuals in terms of their information needs and decision making preferences. These need to be respected for successful ACP. A Belgian study reported that patients with advanced lung cancer had diverse opinions regarding what they wanted to know, who should be involved in discussions and whom they thought should be involved in making decisions at end of life.[26] Some patients prefer to almost unilaterally make their own decisions while others prefer medical staff to have ultimate decision making authority.[26] In addition, a patients religious or spiritual beliefs may influence their desire to participate in ACP, with one study suggesting that those who were more reliant on spiritual coping were less likely to engage in ACP discussions.[27] Taken together, this evidence suggests the importance of exploring patient understanding and preferences as well as obtaining permission before delving further into these areas.

In terms of the tools to assist ACP, an Australian randomised controlled trial found that the provision of a prompt list to patients increased both the number of questions asked and the number of topics covered in prognostic and end of life discussions,[28] suggesting a role for similar tools in ACP. As mentioned above, patients tend to overestimate the likelihood of success of life sustaining interventions like CPR.[14] Relatively simple educational tools which describe the success rate of CPR via the use of a written scenario have been shown to be effective in reducing patient preference for this type of intervention.[12] When decisions to limit life prolonging interventions are made, it is important to then emphasise that care will continue to be provided to ensure that the person is supported throughout the course of their illness.[29] As with all medical care, it is important to document the outcomes of these types of discussions.

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Evidence summary and recommendations

Evidence summary Level References
The evidence suggests that referral to palliative care at the time of diagnosis of metastatic lung cancer is associated with better outcomes in terms of quality of life, survival and aggressiveness of care at the end of life, however the amount of contact from the palliative care service may be important. II [2], [4]
Evidence-based recommendationQuestion mark transparent.png Grade
It is recommended to refer patients with stage IV inoperable NSCLC to palliative care at the time of diagnosis of metastatic disease.

Evidence summary Level References
The evidence suggests that advance care planning is effective and acceptable to Australian populations. The benefits of completing ACP include higher rates of preferences known and respected at end of life, higher patient and family satisfaction and lower rates of family distress and depression. II [5]
Evidence-based recommendationQuestion mark transparent.png Grade
Advance care planning discussions should be initiated with patients, as there are multiple benefits.

Evidence summary Level References
The evidence suggests that there is a need for patient centred advance care planning to address the gaps between clinician and patient expectation and to better understand patients' preferences. II, IV [2], [16], [17], [18], [13], [20], [21], [22]
Evidence-based recommendationQuestion mark transparent.png Grade
Clinicians may explore patients’ understanding of their health situation and offer to provide further information about their prognosis and to explore the patients’ goals/priorities/fears and concerns about the future.

Practice pointQuestion mark transparent.png

Consider referral to palliative care when metastatic disease is diagnosed. Don’t wait until there is definite evidence of medical deterioration.

Practice pointQuestion mark transparent.png

It may take some time for patients and their families to comprehend and process advance care planning discussions. Discussing patients understanding of their disease and/ or prognosis along with their hopes and fears may enable important conversations. It is never ‘too early’ to explore these concerns.

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  1. Australian Bureau of Statistics. 3303.0 - Causes of Death, Australia, 2014. [homepage on the internet] Canberra: Australian Bureau of Statistics; 2016 Available from: http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/3303.0~2014~Main%20Features~Leading%20Causes%20of%20Death~10001.
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  24. 24.0 24.1 24.2 Pardon K, Deschepper R, Vander Stichele R, Bernheim JL, Mortier F, Bossuyt N, et al. Changing preferences for information and participation in the last phase of life: a longitudinal study among newly diagnosed advanced lung cancer patients. Support Care Cancer 2012 Oct;20(10):2473-82 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/22246616].
  25. Chapple A, Ziebland S, McPherson A. Stigma, shame, and blame experienced by patients with lung cancer: qualitative study. BMJ 2004 Jun 19;328(7454):1470 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/15194599].
  26. 26.0 26.1 Pardon K, Deschepper R, Stichele RV, Bernheim J, Mortier F, Deliens L, et al. Preferences of advanced lung cancer patients for patient-centred information and decision-making: a prospective multicentre study in 13 hospitals in Belgium. Patient Educ Couns 2009 Dec;77(3):421-9 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/19828279].
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  28. Clayton JM, Butow PN, Tattersall MH, Devine RJ, Simpson JM, Aggarwal G, et al. Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care. J Clin Oncol 2007 Feb 20;25(6):715-23 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/17308275].
  29. Clayton JM, Butow PN, Arnold RM, Tattersall MH. Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer 2005 May 1;103(9):1965-75 [Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/15789360].

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Further resources

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