Downloaded from http://spcare.bmj.com/ on November 21, 2015 - Published by group.bmj.com
Features
Palliative care in cardiopulmonary transplantation Maria McKenna, Stephen C Clark
Freeman Hospital, Newcastle, UK Correspondence to Dr Maria McKenna, Consultant in Palliative Medicine, Freeman Hospital, Newcastle NE7 7DN, UK; [email protected] Received 29 July 2014 Revised 13 December 2014 Accepted 9 March 2015 Published Online First 26 March 2015
To cite: McKenna M, Clark SC. BMJ Supportive & Palliative Care 2015;5: 427–434.
ABSTRACT Cardiopulmonary transplantation is a lifeprolonging therapy available to a select population of patients with cardiac or respiratory failure. Transplantation is associated with significant morbidity, mortality and unmet palliative care need. Despite recommendations that palliative care should be a core component of the heart and lung transplant process, collaboration within clinical practice is extremely rare. A key reason for this is the misperception among patients, their families and transplant clinicians, that palliative care is analogous with end of life care. Other challenges include prognostication, communication, and the balance of hope and reality. We suggest a change in clinical practice within cardiopulmonary transplantation, whereby palliative care takes place alongside active management. Greater partnership working will demonstrate clinical credibility and highlight the impact of palliative care interventions. Education is required to address current misperceptions and further research should explore the effect of initiatives to improve palliative care provision for this patient group.
INTRODUCTION Cardiopulmonary transplantation is a life-prolonging therapy appropriate for a highly select group of patients with cardiac or respiratory failure. Successful heart and/or lung transplantation became commonplace in the 1980s, with the availability of new and effective immunosuppressive agents. In 2013–2014, 416 adults received a cardiopulmonary transplant in the UK. This includes 198 heart, 210 lung and 8 heart-lung transplants. The waiting list, however, exceeds the number of transplants performed by a significant margin. In the same time period, 533 patients were on the waiting list for a heart, lung or heart-lung transplant, with 95 patients dying before a cardiopulmonary transplant could take place.1
Patients appropriate for transplantation usually have a life expectancy of less than 12–24 months, minimal comorbidities and are highly motivated with good social support. The aim is to select a point for listing where survival is significantly reduced, while still exceeding the predicted waiting time for transplantation, appreciating that continuing deterioration while listed is likely and in due course may render the patient no longer suitable for surgery. The median waiting time to have a heart or lung transplant is 441 and 265 days, respectively; however, there is great variation depending on factors such as blood group, recipient size and the degree of immunological sensitisation. For example, a patient with blood group O could wait over 3 years for a heart transplant.1 The mismatch between donor organ availability and waiting recipients has increased, with heart transplantation activity approximately half that of 15 years ago despite the waiting list growing by 132% in the same time period. Only in the past 2 years has activity started to rise (by over 30% last year), but it remains below the levels achieved a decade ago. Currently, in the UK, only 40% of donors actually undergo retrieval of cardiothoracic organs to benefit those on the waiting list; many are excluded through pre-existing cardiorespiratory disease or dysfunction, aspiration, ventilator acquired pneumonia or other conditions that cause the thoracic organs to be declined. The disparity between donor and recipient numbers is particularly great in the UK due to a general national donor shortage; recent national initiatives have the aim of improving this situation through a number of measures to increase organ donation rates in the population. This has already met with some success but there is much more to do to rival other European nations and North America.
McKenna M, Clark SC. BMJ Supportive & Palliative Care 2015;5:427–434. doi:10.1136/bmjspcare-2014-000769
427
Downloaded from http://spcare.bmj.com/ on November 21, 2015 - Published by group.bmj.com
Features Table 1 Outcome for patients registered on a UK cardiopulmonary transplant waiting list1
Death on the waiting list Removed from waiting list Still waiting Transplant
Heart transplant (non-urgent)
Lung transplant
Outcome at 6 months (%)
Outcome at 3 years (%)
Outcome at 6 months (%)
Outcome at 3 years (%)
5 13 52 31
13 30 11 46
13 2 46 39
19 7 6 68
The progressive nature of advanced organ failure means that clinical deterioration is common during the transplant waiting period. Table 1 describes the clinical outcomes at 6 months and 3 years, for the 309 patients who were registered on a UK cardiopulmonary transplant waiting list between 1 April 2010 and 31 March 2011. Notably, over half of potential heart transplant candidates and around a third of potential lung transplant candidates had not achieved a successful transplant after 3 years. Approximately one-sixth had died by 3 years while waiting for a transplant, with a significant number removed from the waiting list. The majority of patients are removed due to clinical deterioration past the point where a successful operation could be expected, however, a minority improve and become too well for transplantation. The finite pool of donor organs must be utilised in a manner most likely to achieve a good outcome, hence the significant proportion of patients removed from the transplant waiting list due to deterioration in their condition when the risks of transplantation then outweigh the likelihood of success. The shortage of suitable organ donors means that mechanical circulatory support (MCS) has become an increasingly frequent phenomenon in heart transplantation. The majority of patients receiving MCS between 2002 and 2013 were supported with a longterm left ventricular assist device (LVAD).2 The UK National Institute for Health and Care Excellence (NICE) advocates use of a LVAD only as a bridge to cardiac recovery or cardiac transplantation.3 Table 2 details the outcomes for the 427 patients who had a long-term LVAD implanted in the UK between May 2002 and March 2013, of whom 46 also required the support of a long-term right ventricular assist device.2 Only a small proportion of patients (8%) underwent explant of their LVAD, due to cardiac recovery, this is the group where clinical improvement may allow removal from the transplant waiting list. Notably, a greater proportion of this cohort died with a LVAD in situ, than survived to heart transplantation. Complications are common after LVAD implantation, only 30% are free of major adverse effects at 1 year and just 14% are major complication free at 3 years.4 The presence of a LVAD elevates thrombotic risk; hence concurrent anticoagulation and antiplatelet therapy are required. Device thrombosis is an 428
uncommon but serious adverse event in this patient group, which may result in LVAD replacement surgery or death. Bleeding is the most common complication, often gastrointestinal in origin, with significant bleeding (requiring at least a 2-unit blood transfusion) seen in 38% of patients with a LVAD. The prevalence of haemorrhagic and ischaemic stroke in this cohort is 8% and 6%, respectively.5 Infection may originate from the LVAD driveline site; infection is a leading cause of death in patients after LVAD implantation and often impacts on eligibility for heart transplant.6 Other common adverse effects of an LVAD include right heart failure, aortic regurgitation and renal dysfunction. Complications may precipitate a clinical deterioration and/or necessitate removal from the heart transplant waiting list. Heart or lung transplant surgery carries a substantial 30 day mortality rate of around 10–20%. The latest 5 and 10 year survival rates are, respectively, 78% and 59% following heart transplantation, compared with 55% and 32% for lung transplant recipients.1 There has been little change in long-term heart transplant mortality over the past 20 years, whereas early mortality after lung transplant has gradually decreased. The former may reflect use of organs from older donors, as well as transplantation of sicker recipients. New donor optimisation polices and new technologies in organ preservation may bring benefits in future. Life following heart or lung transplantation involves indefinite immunosuppression, frequent follow-up and a high rate of treatment-related complications such as acute rejection, infection, development of malignancy and renal dysfunction. The attrition rate after transplantation from long-term complications is therefore appreciable. Chronic rejection develops in half of lung transplant recipients in the 5 years following transplant and this condition is associated with
Table 2 Outcome for patients with a long-term LVAD2 Outcome
Patients (n)
Transplant Explantation of device Died with device in situ Living with device in situ LVAD, left ventricular assist device.
113 34 164 116
(26.5%) (8.0%) (38.4%) (27.2%)
McKenna M, Clark SC. BMJ Supportive & Palliative Care 2015;5:427–434. doi:10.1136/bmjspcare-2014-000769
Downloaded from http://spcare.bmj.com/ on November 21, 2015 - Published by group.bmj.com
Features significant morbidity, frequent hospitalisations (range 1–34) and a mean survival of 2 years.7 We will now explore issues relating to the role and utilisation of palliative care for patients involved in cardiopulmonary transplantation. DO PATIENTS UNDERGOING CARDIOPULMONARY TRANSPLANTATION HAVE A NEED FOR PALLIATIVE CARE? Palliative care aims to maximise the quality of life of a patient with a life threatening condition and their family, through careful symptom assessment and attention to holistic care. In the UK, palliative care is well established as a service working alongside curative or disease modifying treatments, particularly in the cancer setting. Prognosis can be unpredictable for patients with advanced cardiorespiratory disease, though we know the cohort deemed appropriate for transplant are thought to have a life expectancy of less than 12–24 months. In recent years, UK specialist palliative care teams have moved towards a needs-based approach to patient care, rather than focusing only on prognosis. It has been suggested for many years that the symptom burden and distress associated with nonmalignant disease, such as heart failure, may be greater than that in patients with cancer.8 Comparison of 100 patients living with either advanced respiratory disease or lung cancer, who had a similar performance status, found significantly higher rates of clinically relevant psychological morbidity (90% vs 52%) and worse quality of life ( p
Features
Palliative care in cardiopulmonary transplantation Maria McKenna, Stephen C Clark
Freeman Hospital, Newcastle, UK Correspondence to Dr Maria McKenna, Consultant in Palliative Medicine, Freeman Hospital, Newcastle NE7 7DN, UK; [email protected] Received 29 July 2014 Revised 13 December 2014 Accepted 9 March 2015 Published Online First 26 March 2015
To cite: McKenna M, Clark SC. BMJ Supportive & Palliative Care 2015;5: 427–434.
ABSTRACT Cardiopulmonary transplantation is a lifeprolonging therapy available to a select population of patients with cardiac or respiratory failure. Transplantation is associated with significant morbidity, mortality and unmet palliative care need. Despite recommendations that palliative care should be a core component of the heart and lung transplant process, collaboration within clinical practice is extremely rare. A key reason for this is the misperception among patients, their families and transplant clinicians, that palliative care is analogous with end of life care. Other challenges include prognostication, communication, and the balance of hope and reality. We suggest a change in clinical practice within cardiopulmonary transplantation, whereby palliative care takes place alongside active management. Greater partnership working will demonstrate clinical credibility and highlight the impact of palliative care interventions. Education is required to address current misperceptions and further research should explore the effect of initiatives to improve palliative care provision for this patient group.
INTRODUCTION Cardiopulmonary transplantation is a life-prolonging therapy appropriate for a highly select group of patients with cardiac or respiratory failure. Successful heart and/or lung transplantation became commonplace in the 1980s, with the availability of new and effective immunosuppressive agents. In 2013–2014, 416 adults received a cardiopulmonary transplant in the UK. This includes 198 heart, 210 lung and 8 heart-lung transplants. The waiting list, however, exceeds the number of transplants performed by a significant margin. In the same time period, 533 patients were on the waiting list for a heart, lung or heart-lung transplant, with 95 patients dying before a cardiopulmonary transplant could take place.1
Patients appropriate for transplantation usually have a life expectancy of less than 12–24 months, minimal comorbidities and are highly motivated with good social support. The aim is to select a point for listing where survival is significantly reduced, while still exceeding the predicted waiting time for transplantation, appreciating that continuing deterioration while listed is likely and in due course may render the patient no longer suitable for surgery. The median waiting time to have a heart or lung transplant is 441 and 265 days, respectively; however, there is great variation depending on factors such as blood group, recipient size and the degree of immunological sensitisation. For example, a patient with blood group O could wait over 3 years for a heart transplant.1 The mismatch between donor organ availability and waiting recipients has increased, with heart transplantation activity approximately half that of 15 years ago despite the waiting list growing by 132% in the same time period. Only in the past 2 years has activity started to rise (by over 30% last year), but it remains below the levels achieved a decade ago. Currently, in the UK, only 40% of donors actually undergo retrieval of cardiothoracic organs to benefit those on the waiting list; many are excluded through pre-existing cardiorespiratory disease or dysfunction, aspiration, ventilator acquired pneumonia or other conditions that cause the thoracic organs to be declined. The disparity between donor and recipient numbers is particularly great in the UK due to a general national donor shortage; recent national initiatives have the aim of improving this situation through a number of measures to increase organ donation rates in the population. This has already met with some success but there is much more to do to rival other European nations and North America.
McKenna M, Clark SC. BMJ Supportive & Palliative Care 2015;5:427–434. doi:10.1136/bmjspcare-2014-000769
427
Downloaded from http://spcare.bmj.com/ on November 21, 2015 - Published by group.bmj.com
Features Table 1 Outcome for patients registered on a UK cardiopulmonary transplant waiting list1
Death on the waiting list Removed from waiting list Still waiting Transplant
Heart transplant (non-urgent)
Lung transplant
Outcome at 6 months (%)
Outcome at 3 years (%)
Outcome at 6 months (%)
Outcome at 3 years (%)
5 13 52 31
13 30 11 46
13 2 46 39
19 7 6 68
The progressive nature of advanced organ failure means that clinical deterioration is common during the transplant waiting period. Table 1 describes the clinical outcomes at 6 months and 3 years, for the 309 patients who were registered on a UK cardiopulmonary transplant waiting list between 1 April 2010 and 31 March 2011. Notably, over half of potential heart transplant candidates and around a third of potential lung transplant candidates had not achieved a successful transplant after 3 years. Approximately one-sixth had died by 3 years while waiting for a transplant, with a significant number removed from the waiting list. The majority of patients are removed due to clinical deterioration past the point where a successful operation could be expected, however, a minority improve and become too well for transplantation. The finite pool of donor organs must be utilised in a manner most likely to achieve a good outcome, hence the significant proportion of patients removed from the transplant waiting list due to deterioration in their condition when the risks of transplantation then outweigh the likelihood of success. The shortage of suitable organ donors means that mechanical circulatory support (MCS) has become an increasingly frequent phenomenon in heart transplantation. The majority of patients receiving MCS between 2002 and 2013 were supported with a longterm left ventricular assist device (LVAD).2 The UK National Institute for Health and Care Excellence (NICE) advocates use of a LVAD only as a bridge to cardiac recovery or cardiac transplantation.3 Table 2 details the outcomes for the 427 patients who had a long-term LVAD implanted in the UK between May 2002 and March 2013, of whom 46 also required the support of a long-term right ventricular assist device.2 Only a small proportion of patients (8%) underwent explant of their LVAD, due to cardiac recovery, this is the group where clinical improvement may allow removal from the transplant waiting list. Notably, a greater proportion of this cohort died with a LVAD in situ, than survived to heart transplantation. Complications are common after LVAD implantation, only 30% are free of major adverse effects at 1 year and just 14% are major complication free at 3 years.4 The presence of a LVAD elevates thrombotic risk; hence concurrent anticoagulation and antiplatelet therapy are required. Device thrombosis is an 428
uncommon but serious adverse event in this patient group, which may result in LVAD replacement surgery or death. Bleeding is the most common complication, often gastrointestinal in origin, with significant bleeding (requiring at least a 2-unit blood transfusion) seen in 38% of patients with a LVAD. The prevalence of haemorrhagic and ischaemic stroke in this cohort is 8% and 6%, respectively.5 Infection may originate from the LVAD driveline site; infection is a leading cause of death in patients after LVAD implantation and often impacts on eligibility for heart transplant.6 Other common adverse effects of an LVAD include right heart failure, aortic regurgitation and renal dysfunction. Complications may precipitate a clinical deterioration and/or necessitate removal from the heart transplant waiting list. Heart or lung transplant surgery carries a substantial 30 day mortality rate of around 10–20%. The latest 5 and 10 year survival rates are, respectively, 78% and 59% following heart transplantation, compared with 55% and 32% for lung transplant recipients.1 There has been little change in long-term heart transplant mortality over the past 20 years, whereas early mortality after lung transplant has gradually decreased. The former may reflect use of organs from older donors, as well as transplantation of sicker recipients. New donor optimisation polices and new technologies in organ preservation may bring benefits in future. Life following heart or lung transplantation involves indefinite immunosuppression, frequent follow-up and a high rate of treatment-related complications such as acute rejection, infection, development of malignancy and renal dysfunction. The attrition rate after transplantation from long-term complications is therefore appreciable. Chronic rejection develops in half of lung transplant recipients in the 5 years following transplant and this condition is associated with
Table 2 Outcome for patients with a long-term LVAD2 Outcome
Patients (n)
Transplant Explantation of device Died with device in situ Living with device in situ LVAD, left ventricular assist device.
113 34 164 116
(26.5%) (8.0%) (38.4%) (27.2%)
McKenna M, Clark SC. BMJ Supportive & Palliative Care 2015;5:427–434. doi:10.1136/bmjspcare-2014-000769
Downloaded from http://spcare.bmj.com/ on November 21, 2015 - Published by group.bmj.com
Features significant morbidity, frequent hospitalisations (range 1–34) and a mean survival of 2 years.7 We will now explore issues relating to the role and utilisation of palliative care for patients involved in cardiopulmonary transplantation. DO PATIENTS UNDERGOING CARDIOPULMONARY TRANSPLANTATION HAVE A NEED FOR PALLIATIVE CARE? Palliative care aims to maximise the quality of life of a patient with a life threatening condition and their family, through careful symptom assessment and attention to holistic care. In the UK, palliative care is well established as a service working alongside curative or disease modifying treatments, particularly in the cancer setting. Prognosis can be unpredictable for patients with advanced cardiorespiratory disease, though we know the cohort deemed appropriate for transplant are thought to have a life expectancy of less than 12–24 months. In recent years, UK specialist palliative care teams have moved towards a needs-based approach to patient care, rather than focusing only on prognosis. It has been suggested for many years that the symptom burden and distress associated with nonmalignant disease, such as heart failure, may be greater than that in patients with cancer.8 Comparison of 100 patients living with either advanced respiratory disease or lung cancer, who had a similar performance status, found significantly higher rates of clinically relevant psychological morbidity (90% vs 52%) and worse quality of life ( p
