End-stage heart failure patients in ICU: the importance of advance planning and effective communication

End-of-life (EoL) care remains a key focus in research, and it continues to pose challenges for patients, families and health professionals (Flannery et al, 2016). A report from the Parliamentary and Health Service Ombudsman (2015) emphasised poor communication and not identifying the needs of dying patients as two of the main elements criticised by families during EoL care. This is especially true for patients in the intensive care unit (ICU), as they are critically unwell, often sedated and unable to voice their wishes, therefore increasing the decision burden on the family (Wiegand et al, 2019). A worldwide study conducted by Avidan et al (2021) mentioned that 16–23% of patients who are receiving care in the ICU will die during their stay and more than 10% of all the admissions had limitations of life-sustaining therapies initiated during their stay.

This article will focus on an episode of EoL care of a patient in ICU with decompensated heart failure. Heart failure prevalence is rising every year and, in the UK, it is estimated that over half a million people live with the disease (Johnson et al, 2017). The discussion here will highlight the importance of a holistic care approach for patients and families, as well as the significance of having a treatment escalation plan and advance care plan in place when a patient's condition is deemed to have reached a stage where palliative rather than curative care is appropriate. The importance of effective and compassionate communication with the patient, family, and all members of the multidisciplinary team (MDT) involved in that episode of care will be examined. Earlier referral to the palliative care team and the role of palliative care champions will be explored. Finally, the importance of effective symptom management in EoL care will be discussed, focusing specifically on breathlessness management. Recommendations to improve patient and family experience will be addressed.

Case study

Paul Lee (a pseudonym) was a 72-year-old man with a wife and family. He was diagnosed with dilated cardiomyopathy following a myocardial infarction. This then led to a diagnosis of heart failure with reduced ejection fraction and he had frequent episodes of acute decompensation and hospitalisation. He was admitted to the hospital for fluid management and optimisation before a planned left-ventricular assist device (LVAD) implantation, as he was fluid overloaded. Mr Lee voiced his wishes on multiple occasions during previous episodes of decompensation that he wanted all treatments, but he did not want to be intubated other than for surgery if applicable. An advance care plan was then set in place.

Mr Lee was transferred to the ICU as his cardiac function deteriorated further. He also required inotropic support therefore noradrenaline, adrenaline and milrinone infusions were started. He suffered a ventricular tachycardia cardiac arrest, which led to severe cardiogenic shock, and the medical team opted to urgently support his heart function with an Impella (Abiomed) percutaneously inserted device, as this was an emergency, and he would have not survived the LVAD surgery (see Table 1 for explanation of devices). The medical team hoped that the heart would recover enough with the temporary support of the Impella, to then be eligible for LVAD surgery as a destination therapy. After the Impella device implantation, Mr Lee developed gastrointestinal bleeding and heparin‐induced thrombocytopenia, which added further complexities to his care. During his heart failure journey, Mr Lee was on multiple medication, SGLT2 inhibitors (sodiumglucose transport protein 2 inhibitors) being one of them to help prevent further hospitalisations (National Institute for Health and Care Excellence (NICE), 2021). Most of his regular heart failure medications were stopped after he suffered his cardiac arrest and as he developed multi-organ failure.

A treatment escalation plan was initiated by the team following discussion with Mr Lee and his wife, and it was determined that no additional upgrade in the current mechanical circulatory support would be undertaken, other than the potential LVAD implantation, when and if he was fit enough for the surgery.

After the Impella device showed signs of pump thrombosis, the team voiced concerns regarding the futility of treatment versus the reality of a potential survival with an acceptable quality of life (QoL). During this meeting, a palliative care nurse visited Mr Lee and his wife and they discussed his current situation. Mr Lee was clear in his wishes that, if things were to deteriorate further, he did not want any active interventions undertaken. Mr Lee's wife highlighted that he had already had these conversations with his family previously and they fully supported him. The palliative care team made sure he was comfortable, and the ICU team continued the current level of care to allow Mr Lee to spend time with his family before the Impella device stopped working due to the pump thrombosis. Mr Lee died peacefully that day in the presence of his family.

Prognostication and advance care planning in advanced heart failure

An accurate prognosis can help patients and their families navigate the decisions surrounding how they want to spend the time they have left (Chu et al, 2019; Hui et al, 2019). Prognostication can be very difficult in heart failure as the disease trajectory can be unpredictable (Chang et al, 2022). Heart failure patients tend to have a lesser understanding of their disease than cancer patients and a tendency to overestimate their survival (McIlvennan and Allen, 2016). It was only following an urgent MDT meeting, driven by the impending Impella pump thrombosis, that Mr Lee and his wife were given a clear and realistic prognosis, and it was mentioned that he would not survive the next 48 hours or the LVAD surgery.

Heart failure care is often solely focused on treating the cardiac issue and this can make the transition to the last days of life harder to pinpoint. This diminishes the possibility of keeping patients in their preferred place of care and often leads to initiating inappropriate interventions. Numerous studies have emphasised that cardiology clinicians are reluctant to discuss poor prognosis as it feels like a failure on their part (Beattie et al, 2020; Singh et al, 2020; Chang et al, 2022). Kavalieratos et al (2017) mentioned that heart failure patients and their families regularly need to make decisions on complex and high-risk treatments without good communication on prognosis, advance care planning or even appropriate support. Mr Lee had the support of the entire MDT, including the palliative care team, and was given the space to talk about his fears, voice his wishes and plan his last day of life.

Mr Lee also had an advance care plan before his admission to the hospital, so his wishes for potential treatments were clear for the entire team looking after him. A point made by many studies and guidelines is that advance care planning for heart failure patients is crucial, but often not undertaken (Beattie et al, 2020; Singh et al, 2020; Chang et al, 2022). Advance care planning (also known as anticipatory care planning) allows patients to make decisions about their treatment and care, document their wishes about the future, regularly review their priorities regarding the care they receive, and ensure everyone involved in the MDT is aware (McIlvennan and Allen, 2016). An advance care plan can include a statement of preference and/or the legally binding lasting power of attorney and the advance decision to refuse treatment (Nishikawa et al, 2020). Tools such as the Caring Together Anticipatory Care Plan (Caring Together Programme Team, 2016) are beneficial when caring for heart failure patients in the community.

A study by Wong et al (2016) showed that patients receiving support from palliative care and the heart failure team had a better QoL, fewer re-hospitalisation and a higher incidence of advance care planning, as palliative care services acted as an advocate for the patients across the different specialties. This was also supported by Diop et al (2017), where an increased QoL was seen for heart failure patients when the palliative care team was involved early in their care. The literature discussed here also showed that the symptom burden on the patient with heart failure is comparable to or exceeds the burden in cancer, and that early involvement of palliative care (for both diagnoses) is showing an improvement in resources use (ie, fewer admissions/readmissions to hospital, shorter length of stay) and improved patient satisfaction regarding symptom management and QoL. Patients with chronic heart failure have reported valuing QoL over longevity and highlighted the importance of regaining a sense of control over the trajectory of their illness, which an advance care plan allows (Atkinson et al, 2024).

Few patients have an advance care plan before their admission to critical care, which can be distressing for patients and families as the discussion about escalation-related decisions is now happening during an acute deterioration event, which is already an anxiogenic situation, and being led by a health professional unknown to them (Campling et al, 2018; Beattie et al, 2020). This is routinely seen in clinical practice and, as the research highlights, can cause serious distress.

Shared decision-making is important for patients and the MDT team, as it not only ensures that the patients' values are respected, but also that the patients are fully informed of the risk and benefits regarding medical treatment, which is especially true in heart failure, as treatment such as mechanical circulatory support devices are considered high risk (McIlvennan and Allen, 2016). Patients in ICU tend to have complex care management with multiple clinicians involved. Mr Lee, for example, was under the care of the ICU team and the cardiology team, as well as other members of the MDT. Clear and precise communication within the MDT is also essential to effectively share management plans and to help prevent moral injury due to futile medical treatment at the end of life (Flannery et al, 2016; Beckstrand et al, 2021).

The treatment escalation plan document is a valuable tool to identify the plan clearly and rapidly for patient management, as some inconsistencies have been highlighted regarding the communication of the plans secondary to a lack of visibility in the pages of medical notes and a lack of clarity between teams (Campling et al, 2018). This is particularly true when it involves a patient lacking capacity due to delirium, sedation, or decreased level of consciousness, as the family tend to feel the burden of the decision (Beattie et al, 2020; Atkinson et al, 2024). Johnson et al (2017) suggested a systematic record of cardiopulmonary resuscitation status for every patient, and a treatment escalation plan on admission to lessen the patient's feeling of being ‘targeted’ because of their illness. A treatment escalation plan should be used systematically to improve visibility and to enhance the communication between the MDT.

Breathlessness management

Mr Lee was initially admitted to the hospital for an increase in his breathlessness (see Figure 1), which is one of the most common symptoms in heart failure, with studies mentioning 55 to 95% of patients experiencing breathlessness (Beattie et al, 2020; Reilly et al, 2023). During his ICU stay, Mr Lee experienced regular episodes of breathlessness that were managed using pharmacological and non-pharmacological methods.

Another common theme is that anxiety can exacerbate breathlessness and even cause it. Not only is breathlessness linked to an increased incidence of depression in the patient, it is also a frightening experience for the caregiver, and they can experience anxiety, helplessness, and uncertainty (Schulman-Green et al, 2021). This may contribute to a decrease in the patient's QoL, their daily activities and even their relationship. The MDT ensured that Mr Lee was coping with the stress of the ICU environment, which is a known stressful, noisy and anxiogenic area (Righy et al, 2019), and also that his wife was supported during his care from the onset and not only when she would show signs of distress, a point highlighted by Hutchinson et al (2018) and Schulman-Green et al (2021). How clinicians respond to an episode of breathlessness will shape the patient's and their carer's coping mechanisms (Hutchinson et al, 2018).

Non-pharmacological interventions should be used to help control or alleviate breathlessness and used before opioids. These include measures such as positioning, relaxation techniques and breathing exercises. Hand-held fans have also been highlighted as beneficial and recommended in numerous guidelines (Luckett et al, 2017; Puspawati et al, 2017; Hill et al, 2020).

A common cause of breathlessness in heart failure patients is fluid overload. Mr Lee had been restricted to 1.5 litres of fluid since his admission and started on dialysis in ICU when he stopped responding to the furosemide infusion. Fluid restriction is a common method of preventing fluid overload in heart failure patients as well as diuretics and dialysis if needed (Seferovic et al, 2019; Beattie et al, 2020). Although diuretic medication is a well-established line of treatment for breathlessness due to fluid overloading, fluid restriction is, on the other hand, controversial. Some studies found no benefit from this action (Aliti et al, 2013), whereas others recognised that it could improve the patient's symptoms (Ezekowitz et al, 2017; Jaarsma et al, 2021). In the first author's clinical experience and according to Johansson et al (2016), even if this action provides some benefit, it is also associated with a lower QoL, a decreased adherence to treatment, an increased sense of thirst and dry mouth.

When dyspnoea persists despite non-pharmacological interventions, low-dose morphine can be considered to manage the patient's symptom. There is some debate regarding opioid use, as some studies found moderate evidence to support their use and a higher risk of side effects (Ekström et al, 2018; Brighton et al, 2019), whereas others have shown it was beneficial for patients, especially in EoL care, even mentioning using a continuous subcutaneous infusion or patient-controlled therapy (Seferovic et al, 2019; Beattie et al, 2020; Hill et al, 2020; Johnson and Currow, 2020).

Benzodiazepines can also be used for the relief of anxiety linked to breathlessness.Again, there is conflicting evidence for the use of benzodiazepines, with some studies demonstrating little to no beneficial effect and an increased risk of adverse effects such as drowsiness (Simon et al, 2016; Brighton et al, 2019), while others suggest benzodiazepines are still recommended (Ezekowitz et al, 2017; Seferovic et al, 2019; Hill et al, 2020). See Table 2.

Importance of skilled communication

At the end of life, it is vital to have clear, skilled, and honest communication with patients and their families. Delaying conversations about the end of life and EoL care can cause prolonged suffering and inhibit planning for a dignified death (Beckstrand et al, 2021; Williams, 2023). Sprung et al (2019) highlighted that involving a palliative care team resulted in an increase in advance care planning, a decrease in the frequency of futile medical treatment, and a shortened ICU length of stay.

Poor communication can lead to a feeling of exclusion and confusion, including an increase in stress levels and delay important conversations about treatments and EoL care (Naef et al, 2021). In ICU, this can also lead to the families refusing to acknowledge a patient's poor prognosis, particularly as the process of dying in the ICU can be complex and uncertain, causing more distress (Beckstrand et al, 2021). The research demonstrates there are many obstacles creating barriers to effective communication in ICU, including defective physician communication (giving false hope, unwillingness to include the palliative care team, failure to communicate with the nursing staff and late discussion regarding the end of life). Additionally, inadequate intra-physician communication (creating mixed messages regarding the patient's management), absence of training in caring for dying patients and the environmental components of ICU have been cited to impact communication negatively (Beckstrand et al, 2021; Hynes et al, 2022).

Effective communication and shared decision-making have been linked to higher family satisfaction throughout the episode of care and to an increased QoL and sense of control by the patients (Hynes et al, 2022; Atkinson et al, 2024).Therefore, all healthcare providers caring for a patient or in a patient-facing role must be trained in effective, skilled, and compassionate communication (Anderson et al, 2019). On the last day of life, Mr Lee's nurse was a palliative care champion in ICU. Supported by the palliative care team, the nurse champion has a role in increasing awareness about palliative care, disseminating information and providing support to their colleagues (Engel et al, 2021). Witkamp et al (2016) found that having a champion led to increased communication about the end of life and an improved sense of knowledge and skills within the unit. The authors suggest that supporting palliative care nurse champions, specifically in ICU, could improve patients/family experience of EoL care and empower nursing staff to engage in good communication regarding the end of life (Box 1).

Box 1.

Palliative care champion role

• Acting as an ambassador for palliative care with other staff
• Promoting good EoL care delivery on their unit while liaising with the palliative care team
• Advocating for advance communication training to help reduce anxiety for healthcare workers facing difficult conversations
• Acting as a resource for colleagues, patients, and family
• Increasing awareness of advance care planning and treatment escalation planning and promoting their importance and value
• Participating in training and quality improvement activities on their unit and working environment

EoL in ICU

Hynes et al (2022) stated that providing EoL care in ICU is known to be challenging as it often opposes the ethos of the unit: treatment and cure over palliative care is a mindset common to many units. ICU care is associated with a high mortality rate and leads to a greater level of moral injury perceived by the nursing team, as the end of life can be viewed as a failure in the patients' care and has been linked to expressed compassion fatigue and burnout (Hynes et al, 2022). The uncertainty concerning the patients' wishes or the absence of knowledge secondary to the inability to communicate is also a well-documented source of moral distress (Beattie et al, 2020; Atkinson et al, 2024). ICU nurses are highly skilled and trained in providing life-saving therapies, but EoL education tends to be less frequent, making them ill-equipped in providing the best EoL care possible (Beckstrand et al, 2021; Hynes et al, 2022). Despite the MDT best efforts, the physical environment may present additional barriers with limited visiting time, restricted access to privacy, a noisy environment, a limited number of side rooms, and medicalised surroundings as ICU is a highly specialised unit focusing on life-saving care (Beckstrand et al, 2021; Naef et al, 2021).

Johnson et al (2017) highlighted that care for heart failure patients is also affected by social and organisational barriers. Improving the understanding of the role of the palliative care team among cardiology providers may benefit these patients. They additionally advise that clinicians involved in the care of heart failure patients tend to focus on their professional agenda, following the guidelines on heart failure treatment, rather than holistically assessing the patients. Research also suggests that cardiology professionals tend to adopt a procedural approach to care instead of a patient-centred one and are reluctant to recognise medical limits (Singh et al, 2020). Im et al (2018) described heart failure patients' partial understanding of their condition, leading to a lower appreciation of the severity of it and their unwillingness to engage in conversations around EoL care and planning. Similar findings have been reported in other studies and only emphasise the importance of clear and honest communication from all the MDT members, despite the taboo regarding the end of life in heart failure. In addition, there is a need for involvement of palliative care early in the illness trajectory, to support patients and their relatives more efficiently, although this must be done with a holistic approach (Johnson et al, 2017).

Conclusion

Heart failure is an illness with a significant symptom burden and a difficult prognostication due to an unpredictable progression, causing distress and substantially impacting the QoL of patients and their families. This disease's high morbidity and mortality rate calls for systematically and holistically assessing this patient group, including early involvement of the palliative care team as well as early and honest communication with the patient and their family. The research and heart failure guidelines worldwide make it clear that initiating early advance care planning conversations is imperative and that the MDT must work cohesively to ensure appropriate support for patients.

Symptom management is a priority throughout the disease, especially at the end of life. Breathlessness is one of the most common symptoms of heart failure. The literature undoubtedly demonstrates the importance of correctly assessing the patients' dyspnoea, using non-pharmacological and pharmacological interventions, exploring the adjacent emotions, and providing education for patients/families, to help the patient regain a sense of control, aiming to improve QoL.

The ICU environment brings many challenges in the delivery of holistic care, but also in communication with patients, their families and within the MDT. Compassionate, skilled, honest communication is essential. Transparent communication between all members of the MDT is crucial – no matter how challenging this may be for the wider MDT. Trained palliative care champions can play a key role for patients/families as well as the wider team in the ICU setting. Tools such as a treatment escalation plan can mitigate the lack of visibility and clarity of the management plan and the risk of miscommunication, while highlighting the patient's wishes. To ensure best practice, all healthcare organisations need to invest in education in EoL care and communication skills training. This may empower health professionals in the delivery of compassionate and skilled EoL care in the ICU setting.

KEY POINTS

• Advance care planning, a treatment escalation plan and skilled honest communication are essential in the intensive care unit
• When caring for patients with advanced heart failure, early involvement of palliative care and collaborative working involving the wider multidisciplinary team is required
• Effective evidence-based symptom control is key at the end of life
• Early prognostication and holistic assessment in heart failure care can improve quality of life for the patient (and their family)

CPD reflective questions

• What is required to ensure effective communication with the patient with heart failure and their family in end-of-life care?
• How can palliative care champions in the intensive care unit improve staff knowledge and confidence and what training is required to ensure success in this role?
• Consider the impact of breathlessness on the patient with heart failure and on their family. Why would non-pharmacological interventions usually be the first line of treatment?