Introduction

Nearly one-fifth of patients dying from haematological malignancy will do so on ICU [1]. The majority of haematology patients who require ICU will do so as the consequence of prolonged and highly intensive hospital treatment. Therefore, there will usually have been opportunities to clarify the patient’s preferences and priorities regarding intensity of treatment, location of care and life goals, all of which underpin medical decision-making and informed consent. Clear communication with patients and families is vital to prevent patients being cared for and dying in circumstances that they might not otherwise have chosen. This is particularly true for patients receiving treatments of uncertain benefit and known toxicity offered late in life. Identifying such patients early is crucial for providing best possible end-of-life care and support for their family and healthcare team. However, crisis management is sometimes inevitable, and the transition from stability and good response to critical illness and death can be very brief. Such a rapid transition in the goals of care, and the aspirations of patient and family, is an added source of stress at an already sad and distressing time, and this can have a major impact on all, including the healthcare team.

There is benefit in applying a palliative care approach to all ICU patients for whom recovery is uncertain as the core palliative care principles are those of good multiprofessional healthcare. Given the high mortality within ICUs, embedding high-quality end-of-life care in a systematic way within routine ICU practice offers the most reliable and effective way of meeting patients’ palliative care needs. Most major centres have access to specialist palliative care (SPC) services for additional support.

Palliative care needs of haematology patients

The palliation of haematological malignancy can be challenging, requiring complex skills and experience:

• Decision-making: The relative benefits and harms of intensive medical treatments, including palliative measures, can be finely balanced, and a delay in diagnosing dying can have serious consequences for the patient and family. Difficult choices regarding location and intensity of care need to be informed by the skilful eliciting of patient preferences and priorities while maintaining realistic hope.
  
• Communication: Negotiating intent of treatment and communicating poor response and a change in direction requires excellence in communication skills, with patients, families and the healthcare team.
  
• Symptom management: Debilitating symptoms are common and require a multifaceted approach which can be adapted as the intention of treatment evolves.
  
• Psychological support: The need for psychological and emotional support of patients and carers can be considerable.
  
• Care planning: Coherent, prioritization of present and anticipated needs into a realistic care plan, with review.

Models of palliative care provision

Patients with haematological malignancies are far less likely to receive SPC services than those with other cancer diagnoses [2] and are twice as likely to die in hospital [3]. In a retrospective review, 18% of patients dying from haematological malignancy died in ICU, with none receiving SPC [1]. Possible causes for this include a late diagnosis of dying, an ongoing management by the haematology and ICU team, an uncertain transition to a palliative approach and a highly technological palliation [2]. Prolonged hospitalization may also weaken relationships with primary and community care services, particularly for patients travelling a distance to a regional cancer centre.

Different models of palliative care provision to ICUs have evolved in response to local service provision. The two main models are as follows:

1. SPC team inreach, by physician, specialist nurse or multiprofessional team to see all patients requiring palliative care
   
2. Embedding palliative care in routine ICU practice via:
   
   
   
   1. Staff training in palliative care skills
      
   2. The introduction of tools and documentation to support best possible end-of-life care
      
   3. SPC team support for patients and families with complex, unresolved needs

The latter is the preferred model in the UK [4, 5], as a workforce trained and skilled in end-of-life care offers the most consistent approach around the clock. There are particular advantages in this approach for clinical areas with a high mortality, such as ICUs. A systematic approach to support best possible end-of-life care decision-making, care planning, symptom management, psychosocial care and documentation is in keeping with the drive to improve the reliability, consistency and quality of healthcare. An example is the development of a care bundle for those with limited prognosis for whom recovery from acute illness is uncertain [6]. Hospital-based SPC teams are available in most acute hospitals in the UK. SPC teams offer telephone advice and/or full patient assessment for symptom management, psychosocial support, support for carers and links with community-based SPC services and hospices, and SPC services are usually resourced to advise on those patients with complex, unresolved palliative care needs.

Palliative care assessment

Multidisciplinary assessment encompasses physical symptoms, psychosocial concerns and an understanding of the patient and family’s insight and expectations, priorities and preferences. The assessment informs the overall care plan and the prioritization of symptom management and defines information and communication needs. A full assessment includes:

• What the patient and their family understand about their illness, prognosis and goals of care
  
• The patient’s main concerns – physical, psychological, social, spiritual and financial
  
• The family’s main concerns
  
• The patient’s priorities and preferences regarding intensity of treatment approach, goals and location of care
  
• The impact of the illness and treatment on the patient and those close to them and their coping strategies
  
• What is important to the patient regarding their faith, beliefs and values

Such a holistic assessment is a process which underpins care from the time of diagnosis and which can be added to and reviewed as relationships with the treating team develop and transitions in care are reached.

Symptom management

Physical symptoms such as dyspnoea, fever, pain, haemorrhage and infection are common and frequently compounded by emotional distress, psychological concerns and insomnia. Cognitive disturbances due to direct disease involvement or delirium and drowsiness may be distressing and add to the complexity of symptom management. Treatment toxicities including mucositis, vomiting and diarrhoea or constipation also need to be addressed.

Particular care should be taken with patients unable to self-report pain, and an approach based upon the observation of behaviours and physiological variables, including the adoption of standardized scoring systems, may prevent undertreatment of distressing symptoms [7].

A systematic, stepwise approach to symptom management can be helpful (see Box 23.1).