The Last Breath: When A Patient Is Dying – Dr Anthony Herbert

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from Luke’s Journal 2020 | Breath of Life | Vol.25 No.2

Photo: Liane Metzler on Unsplash

Our breath, along with our heartbeat, is one of the basic building blocks of human life.

It is estimated that a person takes approximately 630 million breaths in a lifespan of 80 years. Much of our breathing is automatic and occurs subconsciously, though there are times when we become more aware of our breathing. This awareness particularly happens when patients are symptomatic from disease. Our first breath, taken at the time of birth, is so critical, as is our final breath. Family members are often present with their loved ones when they take their final breath. This is an emotionally intense time for all, as a person and loved one makes their transition out of this life. Another example that will be discussed in this paper is when health professionals use a focus on their breathing to be more present with their patients.

Theological Consideration

Books have been written on the theme of ‘breath” from perspectives of both the beginning of life (The First Breath 1 ) and the end of life (When Breath Becomes Air 2 ). Jesus’ last breath was a critical part of his crucifixion. “And Jesus uttered a loud cry, and breathed his last” (Mark 15:37). This was presumably in part due to the severe pain, respiratory muscle paralysis and exhaustion associated with the crucifixion process. A new breath is also one of the first signs of the resurrected state. God gives life-giving breath to dead bones in the Old Testament (Ezekiel 37). Such breath carries both power and symbolism for the Christian believer. When Jesus appeared to his disciples, he not only showed them the scars on his hands and his side, but also breathed on them – offering both the Holy Spirit and forgiveness (John 19:22).

“Breathlessness is a common symptom encountered at the end of life.”

Breathlessness At The End Of Life

Along with symptoms such as pain and anxiety, breathlessness is a common symptom encountered at the end of life.

“When you can’t breathe, nothing else matters”.

Children with cystic fibrosis experiencing difficulty breathing, have described the feeling as “can’t speak properly”, “sucking air out of me”, ”someone standing on your chest”, “like an elephant sitting on your chest” and “feels like you’re going to die.” 3

Breathlessness as a symptom has a huge impact on the patient and their quality of life. It can result in both severe physical limitations for the patient and severe psychological distress. This in turn causes distress and can be a burden for the patient’s carers. Sleep is impacted, and the patient may eventually become home or bedroom bound. Portable oxygen delivery devices can be helpful in this context.

Our understanding of both the cause and management of breathlessness has improved dramatically over recent decades. The suffering associated with this symptom has also reduced dramatically, as health professionals become better at managing shortness of breath with both pharmacological and non-pharmacological strategies. For example, a simple fan provides an air stream which can help ease the feeling of breathlessness. 4

Australian clinician and researcher, Professor David Currow, and colleagues, pioneered the way in our understanding of the role of opioids in relieving dyspnoea in patients with advanced illness such as lung cancer and chronic obstructive pulmonary disease (COPD). Their research, which includes randomised controlled trials, found that the use of morphine reduces a patient’s level of distress associated with dyspnoea and sleep, while at the same time not causing or worsening respiratory failure. 5 The main side effect to look out for was constipation. The benefit of this research to patients was evident in August 2019 with a new medicine listing on the Pharmaceutical Benefits Scheme for Kapanol® (slow release morphine) for those suffering with breathlessness through their final stages of life. 6

A key concept to remember when managing dyspnoea is that shortness of breath is particularly anxiety-provoking. This anxiety then causes further dyspnoea in a cyclical fashion as shown in figure 1. This also reminds us to consider how best to support the patient psychologically, in addition to providing pharmacological approaches to management of their breathlessness.

Figure 1 – Cyclical interaction between anxiety and breathlessness

I can recall cases where a patient’s breathlessness and pain have been well-managed at the end of life, giving peace to both the patient and their family at that difficult time. This is a rewarding outcome for the involved palliative care physician or paediatrician. There are also occasions where respiratory distress or breathing changes have been more difficult to manage and this has impacted both the patient and their family. It is such difficult occasions as these that I find harder to manage as a clinician. I often reflect on such cases, hoping that I can learn from them and improve the situation for other patients in the future.

Prayerfulness As A Strategy Of Providing Compassionate Healthcare

The strategy of grounding can help us stay present and in the moment with our patients. By focusing on one of our five senses, we can move ourselves out of past or future thinking to focus on what is happening currently. This focussing can include touch (e.g. our feet on the ground), smell, sound, taste or smell. Another area of focus can be our breathing. This can put out of mind previous different or challenging experiences (e.g. the complex patient we have just seen prior), and also future concerns (e.g. the noisy waiting room with many patients to be seen). We can then focus just on the patient at hand in front of us.

Such an approach allows the clinician to stay present with the patient and also ensures better assessment and care of the patient. Figure 2 demonstrates this approach, with another outcome being the ability for us to show more compassion to our patients and subsequently focus more on holistic care. As we do this, we may become more able to see the patient as a person, rather than as a disease process. It may also allow spiritual aspects of care to be considered, perhaps even prompting the clinician to say a quiet prayer while they are seeing the patient. 7 The Greek word for breath is pneuma which can also mean spirit or soul. Such a focus on our breathing (and prayer) in the moment opens the possibility of “keeping in step with the Spirit” while we consult with patients (Galatians 5:25).

Figure 2 – A schema for providing compassion and holistic care to children 7

Finally, this approach can also allow the clinician to reflect on their own humanity and vulnerabilities, connecting patient and clinician both professionally, and as humans. “Effective communication takes place when practitioners move fluidly between their position as experts and their position as curious and respectful human beings.” 8

Conclusion

Breathlessness is an important symptom to assess and manage. This is particularly the case for patients with advanced illness (e.g. cancer, COPD, heart failure) and when patients are receiving end of life care. This symptom significantly impacts on a patient’s quality of life, and on the patient’s carers. There are both pharmacological and nonpharmacological strategies that can be used to manage breathlessness, and Australian researchers have led the way in understanding the role of opioids in managing breathlessness in the palliative care context. In addition to focusing on the breathing of our patients as a symptom to manage, we can also be mindful of our own breathing when we consult with, and care for our patients. Such a focus can allow us to be more present with our patients and to provide improved holistic medical care. The Greek word for breath, pneuma, can also mean spirit or soul, and a focus on our own breathing can provide opportunities to “keep in step with the spirit”.

Dr Anthony Herbert is a paediatrician specialising in paediatric palliative care in Queensland. He is also the current chair of the Queensland Branch of CMDFA.

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References

1. Gordon, O., The First Breath. Pan MacMillan: Hampshire, 2019.

2. Kalanithi, P., When Breath Becomes Air. Random House: New York, 2016.

3. Prasad, S. A.; Randall, S. D.; Balfour-Lynn, I. M., Fifteencount breathlessness score: an objective measure for children. Pediatr Pulmonol 2000, 30 (1), 56-62.

4. Barnes-Harris, M.; Allgar, V.; Booth, S.; Currow, D.; Hart, S.; Phillips, J.; Swan, F.; Johnson, M. J., Battery operated fan and chronic breathlessness: does it help? BMJ Support Palliat Care 2019. 10.1136/bmjspcare-2018-001749

5. (a) Abernethy, A. P.; Currow, D. C.; Frith, P.; Fazekas, B. S.; McHugh, A.; Bui, C., Randomised, double blind, placebo controlled crossover trial of sustained release morphine for the management of refractory dyspnoea. BMJ 2003, 327 (7414), 523-8. 10.1136/bmj.327.7414.523; (b) Currow, D. C.; McDonald, C.; Oaten, S.; Kenny, B.; Allcroft, P.; Frith, P.; Briffa, M.; Johnson, M. J.; Abernethy, A. P., Once-daily opioids for chronic dyspnea: a dose increment and pharmacovigilance study. J Pain Symptom Manage 2011, 42 (3), 388-99. 10.1016/j.jpainsymman.2010.11.021

6. PBS support for end of life care and opioid dependency. https://www.health.gov.au/ministers/the-hon-greg-huntmp/media/pbs-support-for-end-of-life-care-and-opioiddependency.

7. Liben, S., Mindfulness and Care for Caregiver. In ICPCN World Congress, Mumbai, 2014.

8. Browning, D., To Show Our Humanness – Relational and Communicative Competence in Pediatric Palliative Care. Bioethics Forum 2002, 18 (3), 23-28.