Advance care planning in patients with respiratory failure

Abstract

Advance care planning (ACP) is a complex and iterative communication process between patients, surrogates and clinicians that defines goals of care that may include, but is not limited to, documentation of advance directives. The aim of ACP is to promote patient-centred care tailored to the patient's clinical situation through informed preparation for the future and improved communication between patient, clinicians and surrogates, if the latter need to make decisions on patient's behalf.

The aim of this article is to review research related to ACP in acute and chronic respiratory failure, regarding the process, communication, shared decision-making, implementation and outcomes.

Research has produced controversial results on ACP interventions due to the heterogeneity of measures and outcomes, but positive outcomes have been described regarding the quality of patient–physician communication, preference for comfort care, decisional conflict and patient–caregiver congruence of preferences and improved documentation of ACP or advance directives.

The main barriers to ACP in chronic respiratory failure are the uncertainty of prognosis (particularly in the organ failure trajectory), the choice of the best timing for initiation and the lack of training of healthcare workers. In acute respiratory failure, the ACP process can be very short, should include the patient whenever possible, and is based on a discussion of treatments appropriate to the patient's functional status prior to the event (e.g. assessment of frailty) and clear communication of the likely consequences of possible options.

All healthcare worker dealing with patients with serious illnesses should have training in communication skills to promote engagement in ACP discussions.

Shareable abstract

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Introduction

How people die has changed radically over recent decades. Death comes later in life for many, and dying is often prolonged. Death and dying have moved from a family and community setting to primarily the domain of health systems [1]. Two main factors changed the dying process: the arrival of life-supporting or life-extending measures (such as cardiopulmonary resuscitation, artificial ventilation, hydration and nutrition) and expansion of the human rights movement to embrace a demand for more patient autonomy in medical decision-making [2]. Today's technical ability to extend life using mechanical ventilation often leads to the question of whether it should be done rather than the question of whether it can be done, and patients should have a major role in answering this emblematic ethical dilemma [3].

The aim of this article is to review research related to advance care planning (ACP) in acute and chronic respiratory failure, regarding the process, communication, shared decision-making, implementation and outcomes.

Advance care planning

In 2017 the European Association for Palliative Care proposed a definition for ACP as a process that “enables individuals who have decisional capacity to identify their values, to reflect upon meanings and consequences of serious illness scenarios, to define goals and preferences for future medical treatment and care, and to discuss these with family and health-care providers. ACP addresses individuals’ concerns across physical, psychological, social and spiritual domains. It encourages individuals to identify a personal representative and to record and regularly review any preferences, so that their preferences can be taken into account should they, at some point, be unable to make their own decisions” [4]. Although the definition includes encouragement of documentation of preferences, it clearly states that ACP is much more than the completion of advance directives, which is an instructional directive or “living will” that allows a person to make decisions or state goals of care for future medical treatment and/or appoint a close affiliate to make decisions on their behalf. ACPs are the discussions surrounding the patients’ wishes and care and the advance directive is the formal document. There is frequent terminological confusion regarding these documents in the international literature [5]. Based on the evolving research, investigators made a call in 2010 to expand the definition of ACP from a sole focus on resuscitation/code status documentation or advance directives, to the preparation of patients and caregivers for communication and medical decision-making [6]. Nowadays, advance directives are still important and helpful for families and at the bedside, but they are but one piece of the ACP puzzle [7].

ACP is fundamental for patients with severe illnesses as it defines the structure of communication to be established between the patient and healthcare workers in the presence of a surrogate chosen by the patient (family member, caregiver or friend who may be needed in future stages, if the patient's decision-making capacity is lost), in order to convey the patient's interests and preferences. Every day, patients and families engaged in medical decisions toward the end of life experience distress that could have been lessened or even prevented through appropriate and timely ACP discussions [8].

A study in 2021 showed great heterogeneity in advance directive practices in Europe, finding that only 15 of the 28 European Union countries had developed specific rules on advance directives, which are, if written, legally binding in 86% of cases [9]. It described marked heterogeneity between countries: three countries have advance directive registries (whereas the remaining countries included advance directives only in the medical record); seven required signatures before a notary, a civil officer or a witness; and five required regular revision of the document to maintain its validity [9].

Even though ACP is a core component of palliative care interventions, it should not be limited to palliative care specialists. As in any medical discipline, some core elements of palliative care, such as aligning treatment with a patient's goals, should be routine aspects of care delivered by any practitioner [10]. All healthcare workers dealing with patients with severe illness should have formal training in communication and addressing palliative needs through systematic assessment of symptoms, care needs, caregiver burden and ACP conversations [10, 11].

End-of-life recognition and disease trajectories

The first step in preparing for the end of life is its timely recognition. Although not consensual, it is generally considered the stage of the disease where physical, psychological and functional deterioration is evident. Therefore, this recognition is challenging and has been addressed in two different perspectives: a disease-centred perspective based on a period of irreversible decline before death and/or a time-based perspective related to predicted life expectancy (usually <6 months) [12]. Functional decline at the end of life is quite variable, which led to the proposal of four possible trajectories depending on the underlying disease: sudden death, terminal illness, organ failure and frailty [13]. The first describes a group progressing from normal functioning to death in a brief period with little forewarning and often mild symptoms with or no previously known significant disease. In respiratory illnesses this would be the case of acute respiratory failure (ARF) due to acute respiratory distress syndrome (ARDS), pulmonary embolism or pneumonia.

The terminal illness describes a pattern where patients may function reasonably well with their disease for a certain time before the illness becomes overwhelming and nonresponsive to treatment, with a rapid decline leading to death. This is most common in patients with lung cancer and rapidly progressing neuromuscular diseases such as amyotrophic lateral sclerosis (ALS). The expected trajectory in organ failure occurs with long-term limitation of function and wellbeing. Still, severe and intermittent episodes can sometimes require emergency hospitalisations and may lead to death, but usually a person may experience many such exacerbations. Thus, the prognosis for survival remains ambiguous. This pattern is typical of diseases leading to chronic respiratory failure, such as COPD, and some interstitial lung diseases (ILDs), such as progressive pulmonary fibrosis [14]. The former group typically experiences a slower decline, with a steadily progressive disability before dying from complications such as those associated with advanced frailty of old age and multimorbidity [13, 15].

Understanding these possible trajectories is fundamental for adequate ACP, not only for timing of conversations and communication with patients and caregivers, but also for identifying barriers and facilitators. For instance, the organ failure group experiences considerable uncertainty in short- and long-term prognosis during and after each exacerbation. This uncertainty in prognosis has led to a call for attention to avoid prognostic paralysis [16], thus delaying ACP conversations. Instead, clinicians should acknowledge this ambiguity and consider each exacerbation as an opportunity to review and rediscuss patients’ perspectives for their future.

Controversies regarding advance care planning

Since its conception, ACP has been far from consensual due to inconsistencies in practice and mixed evidence in the literature, which led to some potential objections (figure 1) [7]. In research, the heated debate revolves around the definition of the objectives of this intervention [7, 17–22]; operational measurement (i.e. which outcomes help to evaluate the effectiveness of this intervention) [7, 17, 18, 21, 22]; the right timing to start the intervention; which healthcare workers should be involved; and how they should record the ACP intervention so that it can be consulted, amended as needed, and used in all patient care settings, from hospital to home. The main studies addressing ACP, particularly in respiratory failure, are described in the supplementary material. A recent systematic review found mixed evidence regarding the consistency of end-of-life management and preferences/goals, quality of life, mental health, place of death and healthcare costs reduction [17]. However, ACP interventions demonstrated positive results regarding quality of patient–physician communication, preference for comfort care, decisional conflict, patient–caregiver congruence of preferences and improved documentation of ACP or advance directives [17]. Therefore, ACP should not be considered a magic bullet for improving patients' end-of-life care and reducing healthcare costs. Instead, ACP should be considered as an evolving process of facilitating a shared understanding between patients, surrogates, caregivers and healthcare workers of what matters most to patients, preparing patients and caregivers for the difficult end-of-life decision-making, improving communication and thereby humanising the healthcare system [17, 23].

FIGURE 1.

Objectives of advance care planning (ACP) and the respective potential objections. Information from [17–19, 24–27].

Communication

Communication should be dynamic and both effective (including assuring that what is communicated is received and understood) as well as sensitive (titrated to the needs of the patient and caregiver) [28]. Clinicians should expect and have the skill to engage in a continuum of conversations that allow patients to integrate prognostic information cognitively and emotionally. Patients oscillate between expressions of intense hopefulness and more realistic aspirations. As patients integrate prognostic information, clinicians should discuss what is most important to the patient given the likely illness trajectory and incorporate these goals and values into a recommendation about medical care, including care at the end of life.

There are several potential barriers to ACP discussions from the perspectives of the patient and caregivers, as well as clinicians and healthcare/societal perspectives (figure 2). Due to the difficulty of finding a perfect time to initiate ACP conversations, some patient characteristics and transition points in the disease course have been proposed to help recognise the need to start these discussions (figure 3). It is of note that not uncommonly patients may have more than one serious disease, comorbidity or unexpected event (such as cardiovascular event or neoplasm) that may impact their life trajectory and symptom burden, and these also should be regarded as triggers for reviewing ACP with patients and their surrogates.

FIGURE 2.

Barriers to advance care planning (ACP) discussions.

FIGURE 3.

Triggers/transition points to start or review advance care planning (ACP). BODE: body mass index (BMI), airflow obstruction, dyspnoea and exercise capacity; ILD: interstitial lung disease; PAH: pulmonary arterial hypertension; FEV₁: forced expiratory volume in 1 s; ICU: intensive care unit. Information from [28, 30–34].

It is also important to consider whether clinicians’ challenges such as self-awareness, burnout, existential maturity and capacity to tolerate uncertainty, influence their abilities in this area [29].

ACP uptake can be usefully conceptualised as a process, with stage-based models of health behaviour change which describe patients’ readiness in multiple stages (pre-contemplation, contemplation, preparation, action, maintenance) to engage in the various contents of ACP, including discussions with surrogates and with clinicians and completion of formal documentation (figure 4) [35]. The efficiency of these interactions can be improved by assessing patients’ readiness for engagement, followed by a personalised response [35, 36]. Readiness is a prerequisite for taking up ACP benefits, but can also be promoted by the process of ACP itself [37].

FIGURE 4.

Stage-based models of health behaviour change in advance care planning. CRF: chronic respiratory failure; ARF: acute respiratory failure. Information from [38, 39].

When is the right time to start the ACP process?

Ideally, ACP should be a longitudinal and iterative process which can take days, months or years and should be planned and proactive, rather than reactive and ad hoc [40, 41]. The ACP process should be reviewed whenever there is a change in clinical status or at the request of the patient, as the context may alter choices [42]. In patients with chronic respiratory failure (CRF), it is thought that ACP should preferably be performed when the disease is stable rather than during an exacerbation within a caring, trusting, long-term relationship that allows open and repeated negotiation of patients’ preferences [28, 33, 43, 44]. The same is true for patients with moderately stable severe neurological or neuromuscular disease using noninvasive ventilation, e.g. muscular dystrophy or high spinal cord injury, as reduced respiratory reserve can make them vulnerable to acute ventilatory decompensation.

Acute respiratory failure

ARF is one of the leading causes of hospital and intensive care unit (ICU) admission. In an inpatient setting, shared decision-making is even more complex due to uncertainty of prognosis, lack of previous medical records or functional evaluation and resource limitations [45]. This may lead to over- or under-treatment, both with serious complications. The first can result in patient suffering, conflict between patients, families and the healthcare team (or within the team), prolonged bereavement and inadequate use of resources, while the latter can lead to severe loss of function or patient death.

When we consider disease trajectories, ARF in a previously healthy and fully functional subject may lead to a “sudden death” type of trajectory. In this scenario, there would probably be no ceiling of treatment and only a limited timeframe for communication with the patient related to future care. Even though this can be a significant challenge, it is fundamental to have early, clear and transparent conversations with patients and families or surrogates to define goals of care and patients’ wishes if the clinical situation worsens [15]. The other scenario would be where a patient with known diseases and potentially severe diseases or functional limitations has a severe ARF or acute-on-chronic respiratory failure. In this scenario, patients may have experienced some functional decline and may already have considered and discussed future goals of care (with or without advance directives).

In severe ARF, clinicians must assess the likelihood of reversibility of the causing dysfunction, estimate future functional limitations, reassess patients’ views, and may even need to prioritise access in resource-limited settings or a pandemic disease such as coronavirus disease 2019 (COVID-19). Although it is now a consensus that chronological age alone is not a suitable criterion for assessing the prognosis of critically ill patients, it is still a common problem in clinical practice [46, 47]. A European survey reported that 23 countries had national guidelines for admission of geriatric patients to the ICU and criteria most often present by decreasing order were functionality and comorbidity, life expectancy, clinical frailty scale, cognitive function, age and polypharmacy [48]. Frailty, which can be measured by different scales, has recently emerged as criterion for assessment of treatment appropriateness.

Frailty is a complex, multidimensional syndrome characterised by a loss of physiological reserves and diminished resistance to stressors that increase a person's susceptibility to adverse health outcomes [49, 50]. Frailty is associated with poor outcomes such as ICU and 30-day mortality in the ageing population [51, 52] and high probability of noninvasive respiratory support failure, leading to its use as a criteria for nonadmission to intensive or intermediate respiratory care units [53]. The COVID-19 pandemic posed a significant ethical challenge, as ICUs were overwhelmed with patients with ARF and prioritisation of access was critical. However, the clinician time for assessing patient suitability was short, relatives were often not present and clinical decline could be quite sudden. Rapid evidence-based tools are fundamental for triage in these situations and patient frailty should be included in this assessment [48].

Most research regarding frailty originates from geriatric medicine; however, awareness of its importance as a treatable trait for people with chronic diseases is emerging [50]. The concept should not be applied in conditions where there is no evidence base, e.g. young adults with disabilities due to neuromuscular disorders, such as muscular dystrophies. Frail patients unequivocally present unique challenges in organising and delivering healthcare, especially as individuals approach the end of life, especially when advanced dementia is present, where care should focus on maintaining their highest-order functions [54].

Defining goals of care

In severe ARF, goals of care should be discussed early, focusing care on the patient's wishes for themselves and including surrogate decision-makers whenever possible. Importantly, treatment plans must not be characterised as “doing everything possible” versus providing less care, but rather that the teams’ maximum effort will be made to achieve the patient's attainable personal goals. Clinicians should inform patients and surrogates whether reaching the desired goal is likely and whether it will involve immediate or future invasive interventions, possible ventilator and functional dependence, prolonged institutionalisation and its complications [55]. Clinicians should explain and advocate for the treatment plan they believe is appropriate [56]. The term “potentially inappropriate” might be used, rather than “futile”, to describe treatments with at least some possibilities of accomplishing the effect sought by the patient, but clinicians believe that competing ethical considerations justify not providing them [56, 57]. Discussions about goals of care with seriously ill patients typically occur infrequently and late in the illness trajectory, are of low quality, and focus narrowly on the patient's resuscitation preferences, risking provision of care inconsistent with patients’ values [58].

The patient with advance directives

In 2014, a worldwide professional consensus for important principles in end-of-life care affirmed that physicians should determine whether their patients have advance directives, respect them, and incorporate them into their decision-making process [59].

A recent review has described a marked regional difference of prevalence of advance directives in ICUs ranging from North America (49%) and Central Europe (13%) to Northern and Southern Europe (2.6%) [60]. Even though advance directives may improve intensive and end-of-life care, insufficient knowledge, lack of awareness, poor communication between healthcare workers and patients or surrogates, lack of standardisation of directives, and ethical and legal concerns pose significant challenges to their implementation [61]. It is also crucial to recognise that there are rare instances when advance directives should not be followed, namely when the advance directive calls for an action that is prohibited by the country's regulations, where there is compelling evidence that the patient's views may have changed, or they did not understand the nature of the advance directives previously completed [59].

The patient without advance directives

When pre-defined advance directives do not exist, it is important to assess previous functionality and frailty, focusing on the patient's goals of care and directing the conversation toward concrete goals rather than vague possibilities [55].

It is estimated that approximately half of older adult patients in a hospital are partially or completely unable to communicate or make medical decisions due to serious acute illnesses such as trauma or stroke, chronic conditions like dementia, or sedation given in the hospital [62].

Such incapacity is especially common among older adults and is likely to increase as the population ages, shifting the decision-making process to patient surrogates. Care should be redesigned to accommodate the large and growing role of surrogates and to support surrogates in making healthcare decisions [62]. ACP should focus on shared decision-making between the clinical team and the patient's surrogates, based on clear communication and aiming for attainable goals that would be consistent with patient's preferences, unburdening family members and caregivers and reducing conflicts [21, 55].

Chronic respiratory failure

COPD

COPD is a progressive and debilitating disease characterised by an “organ failure” trajectory, and is currently the third leading cause of death worldwide [63]. Although predictors of mortality in COPD have been proposed, there is no consensus on use of multivariable prognostic models in a real-world clinical setting due to low performance of these models [64].

Research on ACP interventions have presented mixed results in COPD. A systematic review of end-of-life discussions in patients with COPD concluded that they often took place at an advanced stage of the disease, in a busy, acute and stressful environment (respiratory wards and ICUs), and often with clinicians who did not have an established relationship with the patient [34]. This “crisis-orientated” decision-making should be avoided, as it may not be consistent with the patient's goals and may be stressful for the surrogate decision-maker [30]. It should be conveyed to the patient and surrogates as early as possible that in the event of a respiratory emergency, the surest way to avoid unwanted intubation with the potential for subsequent long-term invasive ventilation is to make a clear statement of intent with specific instructions for action, such as in the case of advance directives [65]. Invasive ventilation through tracheostomy, either elective or during an ARF episode, has important clinical implications. Its impact on health-related quality of life is probably influenced by the underlying cause of CRF, baseline level of disability and pre-existing comorbidities [66]. While neuromuscular patients are more likely to require more intense nursing support for higher levels of physical disability, patients with COPD report poorer overall health-related quality of life and lower satisfaction regarding their ability to mobilise, communicate and engage in social activities. A German survey carried out in a specialised weaning centre found that, if given the choice of tracheostomy ventilation again, 43% of COPD patients and 18% of neuromuscular patients would decline, preferring certain death [67].

In the outpatient setting, two nurse-led interventions on ACP showed an improvement in quality of communication [68, 69] and improved anxiety in both patients and loved ones with no change in depression in either group and no difference in quality of death and dying [69]. In another study addressing early palliative care including ACP in patients after admission for acute exacerbation, the authors described a nonsignificant higher hospitalisation for respiratory failure and admission to the emergency ward with no difference in patient anxiety or depression, even though an increase in completion of advance directives was reported [70]. However, in this patient population, increased difficulties have been identified. An Italian study showed that <50% of severe COPD patients (with respiratory failure with long-term oxygen or noninvasive ventilation) discussing end-of-life options retained full comprehension of the options taken 24 h earlier [71]. Also, increasing age and the presence of depression precluded patients from choosing life-sustaining treatment. Physicians should consider the discussion of end-of-life issues, preferably when patients are stable [72].

In clinical practice, although the interest in implementing ACP in respiratory diseases is recognised, its generalisation has the following barriers: prognostic uncertainty and paralysis, insufficient time and training, and a lack of protocols for who is responsible for initiating ACP [32]. In a scoping review, facilitators such as the use of transition points (based on the evaluation of repeated acute care episodes) were used as triggers for identifying the palliative stage of COPD, the appropriate time to initiate ACP and an increased focus on ACP in healthcare workers’ education [32].

Interstitial lung diseases

ILDs are a vast and heterogeneous group of diseases. Most ILDs are characterised by inflammation or fibrosis within the interstitial space, the primary consequence of which is impaired gas exchange, resulting in breathlessness, diminished exercise tolerance and decreased quality of life. Outcomes vary considerably for each of the different ILDs from spontaneous reversibility or stabilisation to respiratory failure and death, particularly in idiopathic pulmonary fibrosis and other progressive pulmonary fibroses [14, 73].

In qualitative studies, people with ILD have reported that being able to plan for future care and discussing end-of-life preferences is important to them [74, 75]. There was a good understanding of the terminal nature of the disease among both patients and carers, but a poor understanding of the prognosis and how the disease would manifest in the final stages [74]. Clinicians recognised the difficulty of balancing the need for information with maintaining hope and the need to clarify their role and responsibility and availability of training and practical guidance [74, 76]. Nevertheless, research in ACP is lacking in this group of diseases. In the recent European Respiratory Society guideline, only one observational study was included in the Population, Intervention, Comparison, Outcome question “In people with ILD, should ACP interventions be used?” [28]. In this study carried out in a multidisciplinary ILD clinic with integrated palliative care, a greater percentage of people who died at home or hospice received ACP (96% versus 83%) [76].

In a recent pilot study, the availability of an early palliative care programme in patients with IPF significantly reduced both the death rate in hospital settings, favouring dying in hospice or at home, and the number of unplanned medical visits and demonstrated a longer survival compared to those who did not receive it [77].

A review proposed an “ABCDE” model as a possible structured approach to comprehensive care, including palliative care, throughout the disease course for patients with ILD. It comprises Assessment (patients’ needs and values, patient as “partner in care”, inclusion of caregiver), Backing (education, self-management, support, rehabilitation), Comfort care and Comorbidities (symptom treatment and other palliative care attitudes), Disease-modifying treatment (including drugs and transplant) and End-of-life care (discussion, timing and treatment limits) [78].

Neuromuscular diseases

This group also comprises a vast group of diseases with different trajectories. ALS is used as an exemplar here due to its rapidly progressing nature, respiratory commitment and specificities regarding patient communication. The practicalities of palliative care in patients with ALS has been described as meeting six challenges: managing complex symptoms, crisis support, relief of caregiver strain, coordination of care, advance care planning, and providing end-of-life care [79]. The trajectory of decline can be very rapid and while there are prognostic features such as older age, early-onset dyspnoea, dysphagia and constipation which are predictive of mortality in the first year [80], the disease course is variable and the opportunity to discuss an ACP should not be missed. A recent European Academy of Neurology ALS treatment guideline recommends that a sensitive judgement should be made on timing of discussion of treatment choices to avoid unplanned admission and emergency ventilation and allow the individual to understand and reflect on decisions, as cognitive capacity may be lost with disease progression [81]. At a minimum, choices for ACP should be explored at the start of noninvasive ventilation.

In ALS too, a systematic review of ACP has produced conflicting outcomes [82]. Beneficial effects of allowing patients to clarify wishes and enabling feelings of control/relief and ability to refuse of unwanted treatments were found, but healthcare workers’ attitudes and beliefs were seen to limit the ACP process. Interpretation is limited by variable methodology including use of structured or semi-structured interviews, employment of an interactive computer decision aid, or retrospective chart review. Completion rates of advance directives increased with disease progression: some patients and physicians tending to wait until severe symptoms developed before discussing life-sustaining treatments [83], while in another study 60% of patients completed “do not attempt resuscitation” orders at the first pulmonary visit [84]. It is notable that preferences may change over time, and so repeated discussions are required. For other neuromuscular or neurological disorders, there may be stability or a gradual decline over long periods, and in others new therapies such as gene therapy in spinal muscular atrophy are changing outcomes. In all these patients the requirement for noninvasive ventilation is a rational trigger for ACP.

Healthcare workers’ awareness and acceptance of ACP are important factors. Several studies have shown limited understanding of ACP by some healthcare workers, resulting in ineffective documentation with the potential of interventions occurring contrary to the patient's wishes. This issue requires addressing with education for all team members as discussed below, and continued review/audit of end-of-life outcomes to assess the congruence of these to the patient's wishes.

In a study of bereaved caregivers of ALS patients, four themes were identified: “readiness for death”, which embraced acceptance; “empowerment”, which focused on patient autonomy/security and caregiver preparation; “connections”, which covered family discussions, agreements and links with others; and “clarifying decisions”, which incorporated quality of life, technology aids and decisional roles [85]. In this study, patients, in conjunction with palliative care team, had completed a “letter for future care”. This helped caregivers fulfil their role and negotiate with the rest of the family, reduced decisional burden and helped caregivers avoid regret. The timing of the letter was key too, as some caregivers felt that if discussions are begun too early it might diminish hope. Undoubtedly, clarifying the patient's wishes helps hospital teams too.

Patients on a transplant programme

Some patients with respiratory diseases leading to CRF are eligible for transplant programmes. Transplant candidates must face the physical symptoms directly related to their end-stage lung disease, as well as psychological distress of the waiting period and a progressively increasing burden of treatment for their underlying disease [86]. Increasing waiting times and growing numbers of patients who experience substantial disease progression while on the waiting list with significant respiratory failure requiring admission to the ICU as a bridge to transplant or die while waiting [87, 88]. A significant proportion of end-stage lung disease patients (lung transplant candidates and recipients in particular) die in a critical care environment, receiving aggressive care disproportionate to their condition [88]. Thus, referral to a lung transplant programme should be a trigger for starting or reviewing ACP.

Dying with dignity

Even though death is part of natural life, society is notorious for being uncomfortable discussing death and the dying process. Similarly, many healthcare workers feel unprepared to provide end-of-life care or communicate with patients and families about these complex topics, usually attributed to a lack of formal training.

A recent review on caring for patients and families of patients dying in the ICU states that it often occurs after a decision to withhold or withdraw life-sustaining therapies [89]. Once a decision has been made to withdraw life-sustaining therapies, family members need to be given a clear description of goals of care as “comfort measures only” and information about what this entails, including therapies or interventions to be withdrawn, monitoring during the dying process and common features of the dying process. It is fundamental to ensure adequate analgesia and sedation and proper implementation of the treatment plan with a collaborative and concerted team effort, avoiding discrepancies in care [89]. A systematic review exploring the notion of a good death in adult patients with advanced and life-threatening diseases described its core elements as control of pain and symptoms, clear decision-making, feeling of closure, being seen and perceived as a person, preparation for death, and being still able to give something to others. Factors that might shape the concept were culture and society, financial issues, religion and spirituality, disease, age and life circumstances [90].

A study on dignity and distress in four nonmalignant diseases (ALS, COPD, end-stage renal disease and the frail elderly) showed that each face unique challenges as they move towards the end of life [91]. While the overall loss of dignity did not differ significantly across these study populations and was comparable to those previously reported in end-stage cancer [92], the patterns of distress in each of these groups revealed distinct and important insights. Patients with ALS reported more dignity-related distress, such being unable to fulfil essential roles, tasks or daily routines, being a burden to others, loss of control and not feeling valued. Patients with COPD were most likely to experience physically distressing symptoms such as the highest intensity of shortness of breath and highest intensity and frequency of anxiety [91].

In some instances, palliative sedation is a potentially necessary strategy to ensure symptom control and a dignified death in accordance with the patient's preferences, directly assessed in ACP conversations and/or advance directives. This should always be performed according to established protocols and best care practice guidelines [93].

Bereavement/impact on relatives and caregivers

During bereavement sadness, anger and symptoms of depression are normal manifestations that usually resolve within a few months. Prolonged grief disorder is a well-defined syndrome of grief manifestations persisting beyond 6 months, which occurs in ∼10% of relatives and adversely affects quality of life [94, 95].

Due to the uncertainty of prognosis related to “organ failure” trajectory, the death of people with COPD or ILD is often perceived as unexpected and they are less likely to die at home than people with cancer, which may affect the bereavement experience [28].

Relatives of patients who die in the ICU experience a considerable burden of harm as they exhibit a higher prevalence of symptoms of anxiety and depression immediately after the loss and half of them have post-traumatic stress disorder symptoms and quality-of-life alterations at 3 months and financial difficulties and psychiatric illness in the long-term [94]. Quality of care pre-bereavement has been associated with the family's bereavement emotional wellbeing [96].

Healthcare financial considerations

Healthcare utilisation and costs in the last year of life increase with proximity to death, particularly in the last month of life [97]. Two randomised controlled trials showed significant reductions in healthcare costs related to ACP [98, 99]. They reported fewer hospitalisations [98] and greater hospice use, fewer emergency department visits and fewer hospitalisations in the last 30 days of life [99]. Although cost-saving is not the primary goal of ACP, if we consider that part of the interventions at the end of life are disproportionate and inconsistent with patient wishes and that resources are limited, we might consider an opportunity to limit healthcare costs while simultaneously maintaining or improving quality and access to care. As with every medical intervention, we should include cost-effectiveness analysis while assessing ACP strategies.

Education and legal considerations

Healthcare systems should provide all healthcare workers with ACP and end-of-life communication training, especially to clinicians dealing with patients with severe diseases. This is fundamental to improve their skills and comfort in delivering bad news and supporting patients and surrogates to define care goals [11, 28, 33, 59, 100, 101].

A recent statement proposed that pulmonary and critical care professional societies should encourage a basic degree of primary palliative care knowledge and skill development among its members, including approaches such as serious illness communication, which may be the basis for ACP discussions [11].

It has also been found that ACP training for healthcare workers has positive effects on their knowledge, attitude and skills. Factors that contribute to ACP training programmes effectiveness are use of decision aids and advanced technology, instructional sessions with role play, training content focused on ACP communication skills and the needs and experience of patient in the ACP process, and a values-based ACP process [102].

A consensus statement about principles of end-of-life care for the critically ill proposed that core end-of-life skills can be divided into two domains: decision-making at the end of life and practical aspects of end-of-life care [59]. Decision-making requires both substantive knowledge (laws, regulations and customary practices of a culture that govern the limits of permissible decisions) and procedural competency (specifics of how to perform end-of-life care). Practical skills include management of medical technology and pharmacology during the dying process. These may vary depending on the cultural and religious context. Still, all ICU clinicians should agree upon the fundamental principle that patients are entitled to a dignified death with as little pain and suffering as possible [59]. These issues when managing acute patients, and those with chronic respiratory failure are particularly complex and challenging when dealing with withdrawal of therapy, e.g. ventilatory support and assisted dying where the legal processes differ internationally [101]. Further consideration of these aspects is beyond the scope of this review.

In short, pulmonary, critical care and palliative care professional societies should support research, training and professional education to improve the provision of generalist palliative care among patients with serious respiratory illness [11, 28, 33].

Conclusions

Advance care planning is a complex and iterative process of communication between patients, surrogates and clinicians that defines goals of care through a patient-centred approach tailored to the clinical situation and informed preparation for the future. It includes, but is not limited to, the documentation of advance directives. ACP aims to improve the quality of care by respecting patient autonomy and improving communication, preparation for the end of life and consistency with previously defined goals.

ACP is far from consensus due to inconsistencies in practice and conflicting evidence in the literature, particularly regarding the timing of intervention, strategies used, who should be responsible for the process, and outcome measurement.

In CRF, the uncertainty of prognosis (particularly progression to organ failure) makes choosing the best time to initiate treatment a challenge for clinicians and patients. In these situations, treatment triggers and transition points may be useful.

In ARF, the ACP process can be very brief, should involve the patient whenever possible, and should be based on a discussion of treatments appropriate to the patient's functional status prior to the event (e.g. assessment of frailty) and clear communication of the likely consequences of possible options.

All clinicians working with seriously ill patients should receive training in communication skills to promote engagement in ACP discussions.

Points for clinical practice

• Advance care planning (ACP) is a complex and iterative communication process between patients, surrogates and clinicians that defines goals of care that may include, but is not limited to, documentation of advance directives, and should be regularly reviewed throughout the disease course.

• In chronic respiratory failure the uncertainty of prognosis (particularly in the organ failure trajectory) makes the choice of the best timing for initiation a challenge for physicians. Triggers and transition points in treatment might be of use in these situations.

• In acute respiratory failure, the ACP process can be very short; it should include the patient whenever possible; and is based on a discussion of appropriate treatments to the patient's functional status prior to the event (e.g. assessment of frailty) and clear communication of the likely consequences of possible options.

• All healthcare workers dealing with patients with serious illnesses should have training in communication skills to promote engagement in ACP discussions.

Questions for future research

Further research should focus on:

• What are the optimal outcomes for evaluation of the advance care planning (ACP) process?

• What is the right time to start the ACP process?

• Which strategies promote better communication between all involved? Which strategies lead to improvement in the quality of death?

Supplementary material

Please note: supplementary material is not edited by the Editorial Office, and is uploaded as it has been supplied by the author.

Supplementary table and referneces ERR-0120-2024.SUPPLEMENT ^{(547.3KB, pdf)}