Tackling taboos: Can we agree on how to talk about end-of-life with young people?

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A death illiterate society

We, as a society, are not particularly good at dealing with death.

In modern Western societies, medical advances (together with social changes in elder-care) mean that it is unusual for young people to see someone close to the end of their life, let alone someone who has died. We dye our hair, get plastic surgery, eat ‘organic’, and airbrush our Instagram photos to avoid looking old. We cling to euphemisms (“passed away”, “we lost him”) to shield ourselves from the reality of death.

When a young person is dying, our discomfort with death is brought into even sharper relief. Medical advances have meant that it’s now quite unnatural for a young person to die. For young people themselves, there are also a lot of barriers to thinking about death. The idea that young people think they are invincible is so commonplace that it’s almost cliché. Their lives – and all the possibilities that come with it – seem to stretch out for decades ahead of them.

Getting cancer young: Facing the impossible

To get cancer young is to face the impossible – the unfathomable.

Most young people describe the day – the moment – they receive their cancer diagnosis as surreal. For some, an almost out-of-body experience: where the rush of fight-or-flight adrenaline swoops in to rescue them – temporarily – from the abject horror of the reality that they could die, just as their adult lives are beginning.

Then, for most, treatment begins: the day-to-day busy-work of biopsies and scans, hospital-parking and clinic appointments, chemo and ward-rounds takes over. The life-threatening takes a backseat to the more immediately life-altering aspects of cancer. The hair loss, mouth sores and nausea. The central-lines that get in the way of swims at the beach; the friends that gradually stop including you in group-texts; the stir-crazy irritation that comes with having your well-meaning family suddenly by your bedside day-in, day-out, repeatedly asking: “How are you feeling? Can I get you anything?”

So for most young people, that initial jolt of fear – the realisation that “I could die from this” – fades to an uneasy hum in the background. A manageable niggle, rather than an all-encompassing panic.

So for most young people, that initial jolt of fear – the realisation that “I could die from this” – fades to an uneasy hum in the background. A manageable niggle, rather than an all-encompassing panic.

This doesn’t mean that they aren’t thinking about it though. Adolescents and young adults (AYAs) are masters of concealment and protection. Despite their reputation of being self-absorbed, both clinical experience and scientific evidence(1) highlights the fact that young people typically worry more about others than they worry about themselves. This concern means that AYAs are often hesitant to ‘make waves’ or broach tricky topics when no-one else in the room opens the conversational door to lead the way. Data increasingly reflects this: AYAs and their families rely upon healthcare professionals to raise topics related to end-of-life;(2,3) when they do not, only a minority of young people will have these conversations.

Talking about end of life: Not just the ‘right’ thing to do

Of course, thankfully, most AYAs with cancer will survive. As a group, AYAs face unique survival challenges though: they experience documented diagnostic delays, lack of access to clinical trials, and often have diseases with unique biology that means that the same cancer treatments used in other age groups don’t work as well.(4,5) The advent of personalised medicine and new immunotherapies has further complicated this picture: in this context, the group of AYAs who may need to live with a relatively poor – or at least, very uncertain – prognosis may be increasing.(6)

We do young people a disservice by avoiding these conversations when they are relevant.

Indeed, a wealth of data highlights the potential costs of not addressing these topics. Young people value honesty, and those who are not able to have these conversations can feel more anxious, have pain that is more poorly managed, and can feel more emotionally-isolated towards the end of their lives.(7) Parents can experience regret if they were not able to talk to their child about the fact that they are dying,(8) and this can place them at greater risk for complicated grief later on. And data shows the very real impact on clinical care that can occur when these conversations are not had: AYAs who are not able to discuss their end-of-life preferences are more likely to experience invasive procedures and active chemotherapy treatment in the last 30 days of their lives, and are more likely to die in an intensive care unit.(9-13)

Little research has explored the impact of avoiding – or not having – these conversations on the health-professionals caring for these young people into their end-of-life phase. However, oncology – and especially paediatric oncology – is already acknowledged to be a specialty associated with a high risk of burnout,(14) and the distressing narrative around treatment ‘failure’ when a patient cannot be cured unfortunately persists.(15) Some recent data has also highlighted clinicians’ vulnerability to psychological distress when their dying patients are also young: in some cases, perhaps just several years apart from the young health-professionals themselves.(16)

Given these data, having conversations about palliative and end-of-life topics could be framed as a low probability, but high cost issue; while most AYAs will not need them, for those who do, the cost of not having these conversations can be great – both for the patients, their families, and likely also their treating teams long after they are gone.

So the question then is, are we as health professionals ready and able to facilitate these conversations?

So how can we do this better?

For a young person with cancer, their families, and the healthcare professionals charged with ‘curing’ their cancer, facing the reality of incurable disease is a little like staring into the sun; shocking, painful, and impossible to do for very long.(17) For dying AYAs, their youth becomes “…a paradox of emerging capabilities and diminishing possibilities”.(18)  Their emerging emotional and cognitive capabilities means that thinking about their futures and the existential realities of life is all-consuming, and overwhelming. In reality, the present-moment of friends, parties, relationships, school, home, and part-time jobs occupies most of what matters right now. This can lead to an amplification of the dual or parallel processes by which patients process death, grief, and bereavement.(19) Young people can demonstrate an even more pronounced ‘yo-yo’ effect: they may pivot from planning their funerals to choosing future university subjects in the course of the same conversation.

This push-pull can also play out in relationships, not least of which the relationship AYA patients have with their healthcare team: in the same way that young people begin to test the bounds of their parental attachments during adolescence, they can become more demanding of their treating teams in the context of disease-related challenges. Some young people may ‘lash out’, relying on their treating teams to weather the storm and remain steady in the face of their existential uncertainty.

These developmentally-normative factors can be confounding, even for the most seasoned AYA health-professionals.

In order to best meet the needs of AYAs and their families, these developmental considerations need to inform each aspect of how end-of-life conversations are undertaken – the who, what, when, and how of it all.(1)  And of course, all of this occurs within a health-system, and social and legal contexts that dynamically impact upon how and to what extent a young person may feel able – and even be offered the opportunity – to have these conversations (see Figure 1).

Figure 1. The developmental context for end-of-life communication with AYAs with cancer. From Sansom-Daly et al., 2019.1

Mind the gap: Standards of care (and gaps in implementation)

In 2015, an international expert team developed standards of care for paediatric psycho-oncology, including two standards,

“Youth with cancer should be introduced to palliative care concepts to reduce suffering regardless of disease status,” and

“When relevant, youth with cancer should be able to access developmentally-appropriate end-of-life communication.” (20)

Articulating standards for clinical excellence was (and remains) an important step for the field, in the same way that the US National Comprehensive Cancer Network establishing distress as the ‘sixth vital sign’(21) solidified the assessment of distress as part of routine clinical practice, and became an effective platform for advocacy and clinical care improvements.

Research has highlighted, though, that wide variability exists in the extent to which these standards around palliative and end-of-life communication are likely being applied on the ground. Lack of staffing capacity and specialist training, and certain clinician beliefs around palliative care prevent teams effectively delivering timely end-of-life communication.(20,22-24) Clinicians can also feel uncomfortable discussing end-of-life issues, and worry that in doing so, they may somehow diminish patients’ hope.(25)

Early data from a cohort of Australian and New Zealand healthcare professionals who care for AYAs echoes these same barriers. We found numerous barriers were endorsed as hindering facilitating both palliative care referrals, and advance care planning conversations. Our preliminary data indicate that across both communication areas, ‘not knowing how to introduce’ these topics was the top barrier endorsed by 72% and 58% of our sample respectively.(26,27) This reinforces the need for support in broaching and undertaking communication around end of life topics.

Blind spots: Knowledge we still don’t have (and need)

These standards provided a concrete step towards improving clinical care in this area. As with all good research, though, arriving at one answer often generates more questions.

For example, given what we know about barriers to applying these standards on the ground, if we are hoping to introduce AYAs to “…palliative care concepts to reduce suffering, regardless of disease status”, then it is likely to be helpful to further define what topics are viewed as most helpful to introduce at different junctures across the disease trajectory.

And further: what does “…developmentally-appropriate end of life communication” look like in practice?

Finally, given the widely acknowledged barriers to end-of-life communication, what sorts of training or support do health-professionals in the field need to support their skill-development and professional confidence to facilitate these conversations? The unique developmental aspects of AYA care are likely to require training that addresses specific skill-sets and innovative approaches.(28)

Pursuing (and achieving) consensus

In 2018, a global collaborative of researchers and clinicians were funded by the Global AYA Accord to address these questions. We are using an international survey of health-professionals with experience of caring for at least 5 AYAs with cancer through the end of their lives. We are using Delphi methods to distill consensus from an established group of experts on these complex issues. Delphi methodology is designed to identify answers as close as possible to the ‘truth’, in inherently complex – and even controversial – topic areas.(29,30) We also aim to synthesise international perspectives on what training is needed to up-skill the AYA workforce.

Achieving consensus in this context is not designed to minimise the complexity and nuance in this area; nor is it designed to do away with the clinical judgment or case-by-case adjustment of language and care-practices that is so vital to patient-centered care. We know that especially for AYAs, excellent, psychosocially-attuned and age-appropriate care does need to be tailored to each patient and family’s needs.(1)  

However, there is now enough data internationally to highlight the potential costs – to all involved – when health-professionals join families in engaging in ‘mutual avoidance’ of the heart-breaking reality that this young person in front of them may not be able to survive their disease.

Achieving consensus among a large, expert group of experienced healthcare professionals won’t solve all the issues in this domain. However, it will be vital to improving care through contributing to three specific advances.

Firstly, we hope to advance scientific discourse around this topic by moving beyond simply saying “it’s complicated”, to a stance whereby the field can acknowledge, “yes, it’s complicated but we also know that health-professionals agree that it is also appropriate to talk about…”

Secondly, by understanding what skill-sets and training modalities healthcare professionals need, interventions and training supports can be developed and tailored to fill these practice gaps. Communication around palliative and end-of-life topics has  been described as an “…interactionally risky business…”;(31)  to help health-professionals have both the courage and capacity to edge into this territory, AYA-specific training is urgently needed.(28)

Finally, generating some consensus around ‘best practice’ – and what it is going to take to get us closer to that – will also be critical to underpinning advocacy efforts to improve clinical care at local, national, and international levels.

This work is justifiably ambitious. We want to advance the evidence base and improve clinical care. We want to support and empower health-professionals to tackle some of life’s most terrifying conversations.

And in doing so, we hope to help AYA health-professionals to be better equipped to support their young patients as they stare into the sun together.


References:

  1. Sansom-Daly UM, Wakefield CE, Pandora P., et al: End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice. Journal of Adolescent and Young Adult Oncology:published online 29 October 2019, 2019. DOI: 10.1089/jayao.2019.0084
  2. Lyon ME, Jacobs S, Briggs L, et al: A longitudinal, randomized, controlled trial of advance care planning for teens with cancer: anxiety, depression, quality of life, advance directives, spirituality. J Adolesc Health 54:710-7, 2014. DOI: 10.2147/COAYA.S49176
  3. Lyon ME, McCabe MA, Patel KM, et al: What do adolescents want? An exploratory study regarding end-of-life decision-making. J Adolesc Health 35:529.e1-6, 2004
  4. Bleyer A: Young Adult Oncology: The Patients and Their Survival Challenges. CA A Cancer Journal for Clinicians 57:242–255, 2007
  5. Bleyer A, Barr R, Hayes-Lattin B, et al: The distinctive biology of cancer in adolescents and young adults. Nature Reviews Cancer 8:288-298, 2008
  6. Thewes B, Husson O, Poort H, et al: Fear of Cancer Recurrence in an Era of Personalized Medicine. Journal of Clinical Oncology 35:3275-3278., 2017
  7. Rosenberg AR, Wolfe J: Palliative care for adolescents and young adults with cancer. Clinical Oncology in Adolescents and Young Adults 3:41-48, 2013
  8. Kreicbergs U, Valdimarsdottir U, Onelov E, et al: Talking about death with children who have severe malignant disease. New England Journal of Medicine 351:1175–1186, 2004
  9. Tang ST, McCorkle R: Determinants of place of death for terminal cancer patients. Cancer Invest 19:165-80, 2001
  10. Mack JW, Chen K, Boscoe FP, et al: High Intensity of End-of-Life Care Among Adolescent and Young Adult Cancer Patients in the New York State Medicaid Program. Med Care 53:1018-26, 2015
  11. Mack JW, Chen LH, Cannavale K, et al: End-of-Life Care Intensity Among Adolescent and Young Adult Patients With Cancer in Kaiser Permanente Southern California. JAMA Oncol 1:592-600, 2015
  12. Mack JW, Cronin A, Keating NL, et al: Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study. Journal of clinical oncology : official journal of the American Society of Clinical Oncology 30:4387-4395, 2012
  13. Mack JW, Weeks JC, Wright AA, et al: End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. Journal of clinical oncology : official journal of the American Society of Clinical Oncology 28:1203-1208, 2010
  14. Whitford B, Nadel AL, Fish JD: Burnout in pediatric hematology/oncology-time to address the elephant by name. Pediatric Blood and Cancer 65:e27244, 2018
  15. Morgans AK, Schapira L: Confronting Therapeutic Failure: A Conversation Guide. The Oncologist 20:946-951, 2015
  16. Tutelman PR, Drake EK, Urquhart R: “It Could Have Been Me”: An Interpretive Phenomenological Analysis of Health Care Providers’ Experiences Caring for Adolescents and Young Adults with Terminal Cancer. Journal of adolescent and young adult oncology, 2019
  17. Wakefield CE: Intervening early to support families after childhood cancer. Presented at the Cancer Council New South Wales, Sydney, 21st August 2019, 2019
  18. Freyer D: Care of the dying adolescent: Special considerations. Pediatrics 113:381-388, 2004
  19. Stroebe MS, Schut H: The dual process model of coping with bereavement: Rationale and description. Death Studies 23:1–28, 1999
  20. Weaver MS, Heinze KE, Kelly KP, et al: Palliative Care as a Standard of Care in Pediatric Oncology. Pediatr Blood Cancer 62 Suppl 5:S829-33, 2015
  21. Howell D, Olsen K: Distress—the 6th vital sign. Current Oncology (Toronto, Ont.) 18:208–210, 2011
  22. Weaver MS, Heinze KE, Bell CJ, et al: Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review. Palliat Med 30:212-23, 2016
  23. Rosenberg AR, Weaver MS, Wiener L: Who is responsible for delivering palliative care to children with cancer? Pediatr Blood Cancer 65, 2018
  24. Weaver MS, Rosenberg AR, Tager J, et al: A Summary of Pediatric Palliative Care Team Structure and Services as Reported by Centers Caring for Children with Cancer. J Palliat Med 21:452-462, 2018
  25. Clayton JM, Butow PN, Arnold RM, et al: Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer 103:1965-75, 2005
  26. Sansom-Daly UM, Wakefield CE, Cohn RJ, et al: Opening the door: Equipping and empowering healthcare professionals to engage young people in gold-standard end-of-life communication. Presented at the 6th Public Health Palliative Care International Conference, Blue Mountains, Australia, 16th October, 2019, 2019
  27. Sansom-Daly UM, Wakefield CE, Wiener L, et al: How can clinicians get the courage to navigate ‘difficult discussions’ with adolescents and young adults? Presented at the Kids Cancer Alliance Adolescent and Young Adult Cancer Symposium, Sydney, Australia, 1st November, 2019, 2019
  28. Wiener L, Weaver MS, Bell CJ, et al: Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer. Clinical Oncology in Adolescents and Young Adults 5:1, 2015
  29. Hui D, Mori M, Meng YC, et al: Automatic referral to standardize palliative care access: an international Delphi survey. Support Care Cancer 26:175-180, 2018
  30. Bradford N, Herbert A, Mott C, et al: Components and principles of a pediatric palliative care consultation: results of a Delphi study. J Palliat Med 17:1206-13, 2014
  31. Lund S, Richardson A, May C: Barriers to Advance Care Planning at the End of Life: An Explanatory Systematic Review of Implementation Studies. PLOS ONE 10:e0116629, 2015
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About Author

Ursula Sansom-Daly

Dr Ursula Sansom-Daly leads the Mental Health Research Stream within the Behavioural Sciences Unit at the University of NSW. She completed her PhD and Masters in Clinical Psychology at the University of NSW, School of Psychology.   Ursula currently holds prestigious Early Career Fellowships from both the National Health and Medical Research Council (NHMRC) and the Cancer Institute NSW (CINSW), and has been chief investigator on grants >$4.9M. In 2019 she received the International Psycho-Oncology Society (IPOS) Hiroomi Kawano New Investigator Award. Alongside her research role, she is also the Clinical Psychologist at Sydney Youth Cancer Service the leading clinical team for the treatment and care of adolescents and young adults (AYAs) aged 15-25 years with cancer in Sydney. A large focus of Ursula’s research to date has been tailoring evidence-based cognitive-behavioural therapy to the AYA cancer experience, which has culminated in the online, group-based “Recapture Life” program. Ursula is currently working with community organisations such as CanTeen Australia and Cancer Council NSW to implement and disseminate this program beyond hospital walls. Ursula has also recently extended the focus of her research to exploring the needs of young people who may not survive their cancer. She has developed and led several studies to improve how communication and psychosocial support is provided for this group, including the recently-funded Global AYA Accord clinician survey around end-of-life communication, which you can access here.

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