Tag Archives: end of life

Holding hands by the beach

Guest post: Oncological endpoints and human relationships

By Deep Chakrabarti, MD, Senior Resident, Department of Radiotherapy, King George’s Medical University, Lucknow, India


I reach the radiotherapy outpatient department on a Monday morning geared up and ready for the week ahead. With thoughts of a busy day and a busy week lying ahead of me, little do I appreciate then that my experiences over the week will continually repeat in cycles, much like the entire human existence and offer me reflections on life. The pandemic has made many of us re-evaluate ourselves and our relationships, many of which have been strained.

I believe that oncology endpoints can be assumed to mimic human relationships. A 70-year-old frail gentleman has a metastatic oral cavity cancer and is planned for palliative therapy with oral methotrexate. While his overall survival will most likely be a few months, we offer him oral metronomic chemotherapy and supportive care aiming for a decent quality of life. Most chemotherapeutic agents offer a similar overall survival of around six to nine months in the context of advanced or metastatic head and neck cancers. Similarly, in life, some relationships come with an expiry date, no matter what.

A 50-year-old gentleman presents with a recurrence of his locally advanced rectal cancer nine months after completing adjuvant treatment. Our surgical colleagues have seen him, and his disease has been deemed unresectable. He has been started on chemotherapy with oxaliplatin and capecitabine and has tolerated the first two cycles.  I know well it is a matter of time that the drugs will delay progression. Progression-free survival (PFS) is a popular endpoint in oncology research that loosely means the time it takes for a disease to get worse.1 Interpersonal relationships are often subject to intense emotional and mental stress, that require continual repairing. However, situations arise when it may not be possible to start on a clean slate entirely, and one is left with no choice but to accept whatever has happened and move on. In other words, one has to take the inevitable that the relationship cannot be “cured”, but further worsening can be avoided. For some tumours like advanced ovarian or colorectal cancers, PFS may even be a loose surrogate for overall survival and may often be nearly equal to overall survival. Likewise, some relationships may not worsen again after one episode when both parties make conscious efforts to put things behind them and move on.

On Tuesday, I see a 40-year-old lady with visceral dissemination of hormone receptor-positive breast cancer receiving systemic chemotherapy. While she and her family have been counselled about their predicament, they may still have some time with their loved one to fulfil their wishes. Like the overall tenure of each human relationship, overall survival parameters vary grossly from one cancer to another. For example, a metastatic gall bladder cancer is likely to be fatal in a matter of mere months, even with the best available chemotherapy. On the contrary, a man with metastatic prostate cancer can be expected to survive a few years with the current standards of care. 

Overall survival is the gold standard when it comes to measuring the worth of any cancer-directed intervention.2However, in patients or in relationships where one knows that the writing is on the wall, quality of life, or quality of the time left in the relationship is a premium. Quality of life is a crucial metric that seeks to quantify the actual well-being of an individual.3 While one may explore multiple therapeutic options to prolong life, one has to make a conscious decision as to how the prolongation will impact on its quality. Merely prolonging life while impairing its quality is detrimental. Similarly, when one knows that a relationship is irreparable, it is best to consider its quality than to keep trying to prolong it endlessly.

On Wednesday, I get an urgent consultation request for a lady with non-small cell lung cancer admitted in the neurosurgical ward who has presented with acute onset lower limb weakness with bladder and bowel involvement and has been diagnosed to have metastatic spinal cord compression. She is 70 years old with a WHO performance score of 2. The surgeons have already determined she is not a candidate for decompression. She is taken for urgent palliation with a single fraction of radiotherapy, with adequate steroid cover. Similar to the previous example, while her fate is probably already decided, but the urgent intervention offers to improve her quality of life, even if minimally.

On Friday, I get a call for radiotherapy planning for a patient who has cervical cancer with brain metastases and had received primary chemoradiotherapy three years ago. She is 74 years old, with a WHO performance score of 3 and requires continuous oxygen support. A decision is taken not to treat her with radiotherapy to the brain but offer her supportive care. Her three-year disease-free interval reminds me that a repaired relationship may suffer a relapse at any time. And sometimes a relapse can be so devastating that it does not offer much in terms of salvage.

On Saturdays, I see my radiotherapy patients on their weekly follow-up. We have a preponderance of head and neck cancer patients who will often present with grade II or III acute skin and mucosal toxicities as they move into the last weeks of therapy. Acute radiation reactions are defined as those occurring within 90 days of treatment and usually heal entirely with adequate care. However, late reactions or those occurring beyond 90 days persist and never completely heal. Some acute reactions may persist as late reactions, the so-called “consequential late reactions” (for example, chronic xerostomia is a consequential late reaction to acute xerostomia). For human relations, an acute bad episode may be amenable to rationalization and understanding, that may completely disappear like the resolution of acute radiation mucositis. But they may even persist, and then never go away completely. Therefore, the role of supportive care cannot be overemphasized, both in cancer care and in human relations.

The previous year has been a revelation for all of us. While it has subjected us to intense mental, emotional, and physical stress4, we have gained a thorough idea of what is vital in our lives. It is imperative that human relationships are valued on par with professional commitments, and the ongoing global crisis should teach us to prioritize personal contentment over professional gains. A morbidity audit from the CDC in August 2020 depicted that nearly one in four healthcare professionals had considered suicide in the immediately preceding one month for their troubles.5 While this is an alarmingly high number, it depicts the frailties ingrained in each of us and reiterates that before clinicians, we are humans. Even when our human forms are damaged and broken, sometimes beyond repair, empathy and patience for ourselves and our fellow beings might hold the key in this perennial struggle. May the progression-free survival of our relationships always closely mimic their overall survival.6 After all, as said by Rabindranath Tagore, “faith is the bird that feels the light and sings when the dawn is still dark.”

Conflicts of interest: There are no conflicts of interest to declare.

Funding: There is no funding to declare.

References

1         Korn RL, Crowley JJ. Overview: Progression-Free Survival as an Endpoint in Clinical Trials with Solid Tumors. Clin Cancer Res 2013; 19: 2607–12.

2         Driscoll JJ, Rixe O. Overall Survival: Still the Gold Standard. Cancer J 2009; 15: 401–5.

3         Selby P. The value of quality of life scores in clinical cancer research. Eur J Cancer 1993; 29A: 1656–7.

4.        Vallée M, Kutchukian  S , Pradère  B et al. Prospective and observational study of COVID-19’s impact on mental health and training of young surgeons in France. Br J Surg. 2020 Oct;107(11):e486-e488.  doi: 10.1002/bjs.11947.

5         Czeisler MÉ, Lane RI, Petrosky E, et al. Mental Health, Substance Use, and Suicidal Ideation During the COVID-19 Pandemic — United States, June 24–30, 2020. MMWR Morb Mortal Wkly Rep 2020; 69: 1049–57.

6         Lebwohl D, Kay A, Berg W, Baladi JF, Zheng J. Progression-Free Survival. Cancer J 2009; 15: 386–94.

With the end in mind

Post by Claire Donohoe (@clairedonohoe6), Editorial Assistant BJS, Consultant Oesophagogastric surgeon, Dublin

We need to talk

A critical role of the surgeon is having difficult conversations with patients and their families. Continuously improving our communication skills is as important an aspect of professional development as staying abreast of technological changes. Recent papers in BJS have highlighted the importance of clear decision making at the end of life regarding when to operate1, 2. Recent global events bring the matter in sharper focus.

One potential barrier to making appropriate decisions is engagement with patients, in a time critical manner, to determine their core values and preferences regarding end of life treatment. In “Learning from Regret” the authors noted that perceived communication barriers, regarding poor prognosis with little prospect of ultimate survival, lead to surgeons undertaking emergency surgery and subsequently regretting this decision when they reviewed their patient’s death retrospectively2. In their leader on a “good surgical death” Chamberlain and Blazeby note the importance of early identification of patient’s goals and warned of the rescue culture and death denial that can results in the surgical arena1. Joliat et al. could only identify seven studies in their systematic review which addressed the impact of patient death on surgeons, none of which included interventions to reduce negative impacts3.

Approaching a difficult conversation

Story telling is a powerful tool for enhancing reflection and a potential way of promoting practice change4. “With the End in Mind” is written by a palliative care specialist Dr Kathryn Mannix. In it, she utilises a series of composite accounts of deaths of patients during her career, to illustrate how the experience of death can be managed, symptoms palliated and people comforted5. This book is available for free download in the UK and Ireland until April 6th through this link.  This book aims to give us permission to directly discuss dying.

From a personal perspective, some of the important themes which led me to reflect on my personal practice included how to address the potential collusion of silence between patients, families and healthcare professionals by ensuring that knowledge is shared and exploring what barriers may exist to a shared understanding of what is happening. This can help promote mutual support within families and facilitate open communication by setting the tone.

By taking the lead on broaching difficult conversations, the healthcare professional can take some of the power of un-named worries away and relieve some of the burden of the taboo. Similarly, by directly addressing the usual trajectory of the decline to death in the metastatic cancer setting as well as the well-recognised in the last days and hours of night as described eloquently by Dr Mannix, I have found a sense of control can be imparted to the dying patient and their supporters.

Infographic prepared by Scottish Quality Safety Fellowship Cohort and Open Change on approaching discussions about dying. Reproduced with authors permission.

How to put it into practice?

Some of the lessons from this book and others have been incorporated into an infographic by cohort 12 of the Scottish Quality Safety Fellowship working with design partner Open Change to illustrate an approach to end of life communication entitled “Difficult Conversations – Why we need to talk about dying”. The focus is on breaking down an approach to end of life conversations using honesty and compassion. It provides a framework for the novice and an opportunity to reflect for the more experienced practitioner.

Mastery can enhance a personal sense of control. Mastering communication skills in fraught situations is fundamental to the provision of high quality surgical care and might perhaps, reduce some of the effects of secondary victimhood experience as we care for our dying patients6.

Acknowledgements

With thanks to Dr Lara Mitchell (@laramitchdr), Consultant Geriatrician and Clinical Lead, and Hazel White, Director Open Change (@openchangeuk) for their insight and providing access to their communication resource.

1.            Chamberlain C, Blazeby JM. A good surgical death. BJS 2019; 106(11):1427-1428.

2.            Boyle FM, Allen J, Rey-Conde T, et al. Learning from regret. BJS 2020; 107(4):422-431.

3.            Joliat GR, Demartines N, Uldry E. Systematic review of the impact of patient death on surgeons. British Journal of Surgery 2019.

4.            Zaharias G. What is narrative-based medicine?: Narrative-based medicine 1. Canadian Family Physician 2018; 64(3):176-180.

5.            Mannix K. With the End in Mind: Dying, Death and Wisdom in an Age of Denial. London: Harper Collins, 2017.

6.            Pellino G, Pellino I. Deaths, errors and second victims in surgery: an underestimated problem. BJS 2020; 107(1):152-152.