O10. Palliative and supportive care

Palliative care – ideally from a multidisciplinary team which includes the primary care team – should be considered early, and should include symptom control and addressing psychosocial issues

Palliative care

Palliative care aims to improve the quality of life of patients and their families when facing life-threatening illness, through the prevention and relief of suffering by controlling symptoms and addressing physical, psychosocial and spiritual issues (WHO 2002). Palliative care encompasses early, supportive care in addition to offering the traditional model of high-quality, end-of-life care for patients close to death.

The provision of early palliative care can improve survival (Higginson 2014, Temel 2010). Early access to palliative care is now recommended for patients with COPD and persisting symptoms.

General palliative care practices such as symptom management and aligning treatment with patients’ goals should be routine aspects of care. For patients with complex symptoms, referral to specialist palliative care may be required (Quill 2013). Specialist palliative care services often work as interdisciplinary teams and may include a wide range of health professionals offering support in hospitals, community or hospices.

Patients with COPD experience many distressing symptoms including breathlessness, fatigue, depression, anxiety and insomnia. However, these symptoms are often poorly controlled and undertreated in advanced disease (Ahmadi 2016, Johnson 2012, Mullerova 2014, Walke 2007). In Australia only 17.9% of COPD patients access any palliative care in their last year of life and only 2.6% of palliative care admissions are for COPD (Rosenwax 2016).  A review of COPD patient deaths occurring in the ICU in 15 hospitals in the USA identified that patients with COPD were less likely to receive specialist palliative care input or have opportunities to discuss end of life care preferences related to resuscitation in the ICU, compared with cancer patients. This occurred despite patients with COPD having longer hospital and ICU stays than patients with cancer. Therefore there is a need to improve patient and carer access to palliative care approaches both generally and more specifically also within ICU (Brown 2016).  Furthermore, a Belgian population cohort study (Faes 2018) identified that during the last six months of life, patients with COPD used resources which focused on preservation of life, with less use of resources or medications to alleviate symptoms or address end-of-life care needs.

Well-described barriers to patients with COPD accessing palliative care include:

• Difficulty prognosticating in COPD
• Patients’ fears of abandonment by their usual physician (Knauft 2005)
• Perceptions that palliative care is only for end-of-life care or patients with cancer
• Clinicians’ lacking time to discuss palliative care, being reluctant to take away hope, and having insufficient knowledge (Hardin 2008, Knauft 2005)
• Current palliative care services are already over-stretched (Quill 2013).

New models of well organised, integrated respiratory and palliative care may overcome these barriers (Crawford 2013, Higginson 2014). In the randomised controlled trial by Higginson et al, patients with advanced lung disease (including COPD) who received integrated palliative care together with care from a respiratory medicine team had improved disease mastery and survival, but no change in quality of life, when compared with patients who received standard care alone  (Higginson 2014). Further research is needed to evaluate new models of integrated care.

Retrospective data from a study including two Victorian hospitals (Smallwood 2018) demonstrated that in the last two years of life, only 18% of patients with severe COPD accessed specialist palliative care, with 6% prescribed opioids as outpatients, despite most having severe chronic breathlessness. Similarly, only 5% wrote an advance directive. In a substudy of the same population, Ross et al reported that investigation burden was still significant at end of life for patients dying in hospital with COPD, with many patients still undergoing diagnostic investigation even in the last 2 days of life (Ross 2021) [evidence level III-3].

Given the difficulty in determining prognosis in an individual with COPD, including palliative care principles and practices into COPD management should not be dependent on making an accurate prognosis. Instead symptom palliation and palliative care approaches should be considered earlier as patients become more symptomatic, occurring concurrently with disease-directed, active treatment.

A retrospective cohort study from Belgium demonstrated that receiving one or more home specialist palliative care (PHC) visits more than 30 days before death was associated with increased appropriate patient-centered medical resource use and lower inpatient and total costs in the last 30 days before death for COPD compared to no PHC (Scheerens 2019). Notably, very few patients with COPD accessed any PHC.

Supportive care – symptom control

Breathlessness is almost universal in severe COPD; however, this symptom remains under-recognised and undertreated (Ahmadi 2016, Blinderman 2009, Gysels 2008).  Therefore it is important to specifically ask about breathlessness and consider using a simple scoring tool (such as the modified Medical Research Council Breathlessness scale – see Box 3 in C2.1 History above) to quantify breathlessness. Patients with a score of 3 or higher have severe breathlessness.

When breathlessness persists at rest or on minimal exertion, despite optimal treatment of all underlying causes, it is deemed refractory (Abernethy 2003).  Refractory breathlessness requires a comprehensive approach, including pharmacological and non-pharmacological strategies.

Non-pharmacological management of breathlessness

Evidence-based, non-pharmacological strategies include smoking cessation, self-management education, physical activity and pulmonary rehabilitation, breathing exercises and the use of a handheld fan to move cool air on the face (Box 8) (Galbraith 2010, Johnson 2016, Marchetti 2015, Marciniuk 2011). Additionally, other management strategies such as chest wall vibration (Marciniuk 2011), neuromuscular electrical stimulation (Vieira 2014), activity pacing and energy conservation may be helpful.

There is little evidence to support the use of “palliative” oxygen therapy in patients with breathlessness and mild hypoxaemia (Abernethy 2010), however, the prescription of oxygen in these clinical situations should be made on an individual basis.

Pharmacological management of breathlessness – opioids and benzodiazepines

In COPD, there is growing evidence that regular low dose oral morphine (<30mg/day) may safely and effectively be used to treat refractory breathlessness in patients with advanced COPD (Abernethy 2003, Barnes 2016, Currow 2011, Ekstrom 2015a, Ekstrom 2014).

A 2015 systematic review and meta-analysis comparing opioids with placebo in 16 studies (271 participants, of whom 95% had COPD) found small short-term benefits in dyspnoea with minimal adverse effects and unclear effects on quality of life (Ekstrom 2015a). A review in 2016, which included 26 RCTs with 526 participants, identified a small but beneficial effect from oral and parenteral (but not nebulised) opioids on breathlessness (Barnes 2016).  Abdallah et al (Abdallah 2017) have demonstrated improvements in exertional dyspnoea and exercise endurance, as measured by cardiopulmonary exercise testing with single dose immediate release morphine syrup (0.1mg/kg) up to a maximum of 10mg.  Adverse effects from opioids include predictable gastrointestinal effects (constipation,  nausea and vomiting), drowsiness and light-headedness. However, in the reviewed studies there were no cases of hypoventilation, respiratory depression, treatment-related hospitalisations or death. Nevertheless, opioids should be used with care in COPD (Barnes 2016, Ekstrom 2015b). Low dose morphine SR, 10mg twice day, with up-titration after 1 week if required, in a double blind RCT with 111 patients, over 4 weeks, significantly improved health status as measured by the CAT score (-2.18 95% CI -4.14 to -0.22). Overall, there was no effect on breathlessness measures; however, in the subgroup of people with MMRC 3-4, there was a significant difference in change of worst breathlessness in the previous 24 hours between the treatment groups (-1.33, 95% CI -2.5 to 0.16; p=0.03).  The only adverse effect demonstrated was constipation (Verberkt 2020) [evidence level-II].

While there is good quality evidence to support a once daily, extended-release morphine dosing schedule (Abernethy 2003), some patients may prefer to use immediate-release morphine as required for breathlessness. Morphine dosing should therefore be individualised, taking into consideration comorbidities, starting at a low dose and up titrating weekly until efficacy is achieved, or to a maximum of 30mg/day. Laxatives should be prescribed to prevent constipation and patients should be warned of side effects. Both patients and carers require both verbal and written education regarding how to use morphine for breathlessness. Additionally, early medical review within 1-2 weeks is recommended on initiating morphine or increasing the dose.  Morphine sulfate pentahydrate (modified release) capsules are approved for use in people with severe chronic breathlessness, despite optimal treatment of all the underlying causes contributing to dyspnoea.  Please refer to PBS criteria for further detail: http://www.pbs.gov.au/medicine/item/11760Y-8349K.

There is no evidence to support a beneficial effect from benzodiazepines for the relief of breathlessness in patients with COPD, however, they may be considered as a second or third line treatment when non-pharmacological strategies and opioids have failed (Simon 2016).

As breathlessness management is complex, requiring multiple approaches, in addition to significant self-management education of patients and their carers, individualised written breathlessness management plans may be useful.

A retrospective single-centre study (Taverner 2019) found over use of antibiotics occurred commonly at the end of life in patients with COPD dying in hospital.

Goals of care

Discussing goals of care and future treatment wishes should occur early, in a non-acute setting and should involve their General Practitioner. The option of including carers or family members should be raised.

Topics to consider:

• Disease severity, symptoms, quality of life and possible prognosis
• Patients’ and carers’ values and beliefs
• Treatment options including non-invasive ventilation, admission to an intensive care unit, and intubation for mechanical ventilation (specialist input may be required)
• What death might be like
• End-of-life care wishes, including place of death preferences

These conversations occur as several discussions over multiple appointments. This has the advantage of gently adding each new topic gradually, thereby reducing the chance of causing distress.

As a result of discussing goals of care, some patients may wish to appoint a medical power of attorney or write an advance treatment directive (which must also be signed by a medical practitioner). It is vital that other health professionals involved in the patient’s care and family members or carers are fully aware of the person’s future care wishes and of the existence of any advance treatment directive.

All patients should routinely and regularly be asked if they wish to discuss or update their goals of care. More than a third of patients with severe medical problems were observed to change their preferences regarding life supporting measures at least once over a period of twelve months (Janssen 2012).

End-of-life care

Patients with distressing symptoms or other challenging situations may benefit from referral to a specialist palliative care team for:

• Management of persisting refractory symptoms
• Psychosocial, spiritual or existential care
• Co-ordination of care
• Active management of the terminal phase (at home or in a hospice)
• Emotional care and bereavement support of relatives and carers

Key points 

1. Palliative care should be considered early and should include symptom control and addressing psychosocial and spiritual issues
2. Active treatment of persisting symptoms or challenging issues may require a multidisciplinary team (which includes primary care, respiratory medicine, and palliative care)
3. The introduction of palliative and supportive care principles and discussion of goals of care should be routine in patients with persisting symptoms despite optimal disease-directed treatment

Box 8: Breathlessness management strategies