529858 research-article2014
PMJ0010.1177/0269216314529858Palliative MedicineEditorial
Editorial Palliative Medicine 2014, Vol. 28(5) 373–374 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216314529858 pmj.sagepub.com
Is effective, person-centred, homebased palliative care truly achievable? When we say that most people express a desire to die in their own homes, what do we really mean? Have we really explored and elucidated what this means and can we promise the appropriate resources, skilled practitioners and support to enable this to happen? Palliative care at home has been a topic of interest for practitioners, researchers and, patients as well as families for some time;1,2 yet, the issue is often over-simplified in terms of choice, place of death and preferences for place of care. Indeed, it is standard practice in the United Kingdom for patients to be asked about their choice regarding place of care and place of death on admission to palliative care services, without necessarily exploring the issue further. Is this a considered person-centred issue or a tick-box exercise? Health policy around the world and in the United Kingdom, in particular, see home as a panacea in terms of a place to die and attempts made to enable a shift from acute-based care to a community-focussed care, and in turn enable more people to be cared for and to die at home. Perhaps, however, the issues are often confused and misinterpreted. We know, for instance, there is a difference between preferences for place of care and place of death and also there are differences in need, perception, choice and preference in palliative care with different disease patterns3 as well as resource-poor countries.4 The mixedmethods systematic review conducted by Murtagh et al.3 found that for some disease types such as chronic respiratory disease (chronic obstructive pulmonary disease (COPD)), acute hospital was the preferred place of care and death. Those preferring hospital found home a lonely and frightening place to be sick. Views were shaped by social support, self-reliance, religion and past illness experience. Preferences of hospital over home were shaped by concerns about being a burden and families ability to provide care. Also, for older people, the wish for home care was balanced with the conditions older people lived in. The older person perceived that they had to have someone who was willing and able to take on the caring role at home, preferences depended on whether the older people felt safe at home and whether they perceived their care as
too heavy a burden for their family. In a resource-poor context, the population-based survey by Downing et al.4 ascertained that home was the least preferred place of death. Psychosocial issues, such as ensuring family members were not worried, were prioritised over relieving pain and discomfort. Is choice possible and achievable, therefore, when there are still unmet needs? Ventura et al., in this issue, in their systematic review, explore the unmet needs of palliative care patients and carers from the perspective of patients. The chief unmet need was effective communication with health-care professionals. Perhaps, this is unsurprising; however, it is a sad indictment for home-based palliative care that something that should be relatively easy to achieve, which is not resource, country or disease specific, effective communication with patients and family members and among health-care professionals was not achievable. This should be a priority for practitioners to address effective professional-to-professional communication and effective teamwork. To achieve this, health-care professionals need good role models, effective leadership and support and appropriate resourcing from management and policymakers. Teamwork can, and should, be the hallmark of effective palliative care. It is interesting that in the United Kingdom, a social media campaign #hellomynameis, instigated by a medical doctor, Kate Granger, who is herself living with advanced cancer, has taken off exponentially. The simpleto-achieve practice of heath-care professionals introducing themselves to patients by name is making a difference across the United Kingdom. Indeed, it is worrying that this was not routine practice in health care anyway. Hunt et al., in this issue, report a survey regarding endof-life care and achieving preference for place of death in England. Probably, not surprisingly, of the people who expressed a preference, 73.9% cited home as their preferred place of death. The authors argue that knowledge and achievement of preferences for place of death could improve end-of-life care. The difficulty is, however, that if communication with professionals is not effective, resources are inadequate and equity of care not established, then preferences will not be achieved. We need to consider equity of care and whether and how preferences can be achieved, before we offer people choices that cannot or are not achieved.
Downloaded from pmj.sagepub.com at TEXAS A & M INTL UNIV on March 15, 2015
374
Palliative Medicine 28(5)
Moreover, choice relies on cost efficiency and effectiveness of care. Do we actually give patients and families real choice? Sometimes medical and treatment issues and resources mean that people are unable to be cared for at home, even if they wish to do so. Gardiner et al. in this issue acknowledge that evidence regarding the economic aspects of palliative care is limited, particularly the costs (I would argue that these costs are emotional as well as fiscal) for relatives caring for families at the end of life. They call for increased research in this area. I would suggest that we particularly need evidence for the area of economic aspects in the area of caring for the frail elderly and those with multiple comorbidity and psychosocial unmet needs. In addition, do we consider the issue of safety at home? This may be safety in terms of relatively simple issues, such as moving and handling, or safety in terms of treatment issues such as artificial hydration such as the administration of subcutaneous fluids. With increasingly sophisticated palliative care interventions, whose responsibility is this safety? In these circumstances, do we consider the benefits of an acute admission to both the patients and their family? Resources and equity are also issues that are not often addressed. Differences in resources can also happen in areas where resources are good. We may often hear the phrase ‘Post code lottery’. I would argue that this also equates to home-based palliative care, as well as the oftenquoted access to treatment and resources: The very fact of the death of someone close to them aroused in all who heard about it, as always, a feeling of delight that he had died and they hadn’t. (Leo Tolstoy, The Death of Ivan Ilych)
The quote from Ivan Ilych5 reminds us that most people would rather avoid death, and the majority of people still fear death more than anything else. This includes homebased palliative care and includes fear of uncertainty, and fear of time and actual death, for both the person dying and their families, acknowledged in the recent Kenyan survey. Are these issues acknowledged or dealt with by healthcare professionals when they are considering place of care and preferences for death for people and their families? Do we really consider how to support families when caring for their loved ones? Furthermore, there are other inequalities in relation to home-based palliative care; this may be related to marginalised groups; diseases type; area, urban or rural; or access to specialist services as well as economic issues. We also rely on families undertaking doing bulk of care, if this is the care those families and patient need,
support to self-care and emotional and practical support. Considerations to improve not only home-based palliative care include supporting family members more effectively in both the home and the acute hospital setting. This includes support as well as consideration of space and time. Nevertheless, the sometimes underestimated linchpin to good-quality palliative care at home is expertise of community nurses, excellent teamwork and nurses acting as key workers coordinating care. For home-based palliative care to be effective, therefore, wherever the patient is, a key consideration is appropriately resourced community care, in particular, providing support and resource to community nursing, up-skilling community nurses in terms of knowledge, skills and attitudes, especially improving and supporting effective communication and teamwork. The community nurse acting as a key worker, coordination of care in the community can improve care. Effective homebased palliative care can be achieved if appropriately resourced and supported. Finally, for effective home-based palliative care to be truly achievable, it should be more than the responsibility of palliative care and other health services. It should be a whole person’s as well as a whole community’s responsibility. References 1. Thorpe G. Enabling more dying people to remain at home. BMJ 1993; 307(6909): 915–918. 2. Higginson IJ and Sen-Gupta GJA. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 2000; 3(3): 287–300. 3. Murtagh F, Higginson I, Banerjee S, et al. Understanding place of death for patients with non malignant conditions: a systematic literature review. NIHR SDO Report HS&DR – 08/1813/257, September 2012. Southampton: National Institute for Health Research. 4. Downing J, Barbara G, Gikaara N, et al. Public preferences and priorities for end-of-life care in Kenya: a populationbased street survey. BMC Palliat Care 2014; 13(1): 4. 5. Tolstoy LN. The death of Ivan Ilyich. London: Penguin Classics, 2008. Bridget Johnston Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, School of Health Sciences, The University of Nottingham, Nottingham, UK Corresponding author: Bridget Johnston, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, School of Health Sciences, The University of Nottingham, Queen’s Medical Centre, Nottingham NG7 2HA, UK. Email: [email protected]
Downloaded from pmj.sagepub.com at TEXAS A & M INTL UNIV on March 15, 2015
PMJ0010.1177/0269216314529858Palliative MedicineEditorial
Editorial Palliative Medicine 2014, Vol. 28(5) 373–374 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216314529858 pmj.sagepub.com
Is effective, person-centred, homebased palliative care truly achievable? When we say that most people express a desire to die in their own homes, what do we really mean? Have we really explored and elucidated what this means and can we promise the appropriate resources, skilled practitioners and support to enable this to happen? Palliative care at home has been a topic of interest for practitioners, researchers and, patients as well as families for some time;1,2 yet, the issue is often over-simplified in terms of choice, place of death and preferences for place of care. Indeed, it is standard practice in the United Kingdom for patients to be asked about their choice regarding place of care and place of death on admission to palliative care services, without necessarily exploring the issue further. Is this a considered person-centred issue or a tick-box exercise? Health policy around the world and in the United Kingdom, in particular, see home as a panacea in terms of a place to die and attempts made to enable a shift from acute-based care to a community-focussed care, and in turn enable more people to be cared for and to die at home. Perhaps, however, the issues are often confused and misinterpreted. We know, for instance, there is a difference between preferences for place of care and place of death and also there are differences in need, perception, choice and preference in palliative care with different disease patterns3 as well as resource-poor countries.4 The mixedmethods systematic review conducted by Murtagh et al.3 found that for some disease types such as chronic respiratory disease (chronic obstructive pulmonary disease (COPD)), acute hospital was the preferred place of care and death. Those preferring hospital found home a lonely and frightening place to be sick. Views were shaped by social support, self-reliance, religion and past illness experience. Preferences of hospital over home were shaped by concerns about being a burden and families ability to provide care. Also, for older people, the wish for home care was balanced with the conditions older people lived in. The older person perceived that they had to have someone who was willing and able to take on the caring role at home, preferences depended on whether the older people felt safe at home and whether they perceived their care as
too heavy a burden for their family. In a resource-poor context, the population-based survey by Downing et al.4 ascertained that home was the least preferred place of death. Psychosocial issues, such as ensuring family members were not worried, were prioritised over relieving pain and discomfort. Is choice possible and achievable, therefore, when there are still unmet needs? Ventura et al., in this issue, in their systematic review, explore the unmet needs of palliative care patients and carers from the perspective of patients. The chief unmet need was effective communication with health-care professionals. Perhaps, this is unsurprising; however, it is a sad indictment for home-based palliative care that something that should be relatively easy to achieve, which is not resource, country or disease specific, effective communication with patients and family members and among health-care professionals was not achievable. This should be a priority for practitioners to address effective professional-to-professional communication and effective teamwork. To achieve this, health-care professionals need good role models, effective leadership and support and appropriate resourcing from management and policymakers. Teamwork can, and should, be the hallmark of effective palliative care. It is interesting that in the United Kingdom, a social media campaign #hellomynameis, instigated by a medical doctor, Kate Granger, who is herself living with advanced cancer, has taken off exponentially. The simpleto-achieve practice of heath-care professionals introducing themselves to patients by name is making a difference across the United Kingdom. Indeed, it is worrying that this was not routine practice in health care anyway. Hunt et al., in this issue, report a survey regarding endof-life care and achieving preference for place of death in England. Probably, not surprisingly, of the people who expressed a preference, 73.9% cited home as their preferred place of death. The authors argue that knowledge and achievement of preferences for place of death could improve end-of-life care. The difficulty is, however, that if communication with professionals is not effective, resources are inadequate and equity of care not established, then preferences will not be achieved. We need to consider equity of care and whether and how preferences can be achieved, before we offer people choices that cannot or are not achieved.
Downloaded from pmj.sagepub.com at TEXAS A & M INTL UNIV on March 15, 2015
374
Palliative Medicine 28(5)
Moreover, choice relies on cost efficiency and effectiveness of care. Do we actually give patients and families real choice? Sometimes medical and treatment issues and resources mean that people are unable to be cared for at home, even if they wish to do so. Gardiner et al. in this issue acknowledge that evidence regarding the economic aspects of palliative care is limited, particularly the costs (I would argue that these costs are emotional as well as fiscal) for relatives caring for families at the end of life. They call for increased research in this area. I would suggest that we particularly need evidence for the area of economic aspects in the area of caring for the frail elderly and those with multiple comorbidity and psychosocial unmet needs. In addition, do we consider the issue of safety at home? This may be safety in terms of relatively simple issues, such as moving and handling, or safety in terms of treatment issues such as artificial hydration such as the administration of subcutaneous fluids. With increasingly sophisticated palliative care interventions, whose responsibility is this safety? In these circumstances, do we consider the benefits of an acute admission to both the patients and their family? Resources and equity are also issues that are not often addressed. Differences in resources can also happen in areas where resources are good. We may often hear the phrase ‘Post code lottery’. I would argue that this also equates to home-based palliative care, as well as the oftenquoted access to treatment and resources: The very fact of the death of someone close to them aroused in all who heard about it, as always, a feeling of delight that he had died and they hadn’t. (Leo Tolstoy, The Death of Ivan Ilych)
The quote from Ivan Ilych5 reminds us that most people would rather avoid death, and the majority of people still fear death more than anything else. This includes homebased palliative care and includes fear of uncertainty, and fear of time and actual death, for both the person dying and their families, acknowledged in the recent Kenyan survey. Are these issues acknowledged or dealt with by healthcare professionals when they are considering place of care and preferences for death for people and their families? Do we really consider how to support families when caring for their loved ones? Furthermore, there are other inequalities in relation to home-based palliative care; this may be related to marginalised groups; diseases type; area, urban or rural; or access to specialist services as well as economic issues. We also rely on families undertaking doing bulk of care, if this is the care those families and patient need,
support to self-care and emotional and practical support. Considerations to improve not only home-based palliative care include supporting family members more effectively in both the home and the acute hospital setting. This includes support as well as consideration of space and time. Nevertheless, the sometimes underestimated linchpin to good-quality palliative care at home is expertise of community nurses, excellent teamwork and nurses acting as key workers coordinating care. For home-based palliative care to be effective, therefore, wherever the patient is, a key consideration is appropriately resourced community care, in particular, providing support and resource to community nursing, up-skilling community nurses in terms of knowledge, skills and attitudes, especially improving and supporting effective communication and teamwork. The community nurse acting as a key worker, coordination of care in the community can improve care. Effective homebased palliative care can be achieved if appropriately resourced and supported. Finally, for effective home-based palliative care to be truly achievable, it should be more than the responsibility of palliative care and other health services. It should be a whole person’s as well as a whole community’s responsibility. References 1. Thorpe G. Enabling more dying people to remain at home. BMJ 1993; 307(6909): 915–918. 2. Higginson IJ and Sen-Gupta GJA. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med 2000; 3(3): 287–300. 3. Murtagh F, Higginson I, Banerjee S, et al. Understanding place of death for patients with non malignant conditions: a systematic literature review. NIHR SDO Report HS&DR – 08/1813/257, September 2012. Southampton: National Institute for Health Research. 4. Downing J, Barbara G, Gikaara N, et al. Public preferences and priorities for end-of-life care in Kenya: a populationbased street survey. BMC Palliat Care 2014; 13(1): 4. 5. Tolstoy LN. The death of Ivan Ilyich. London: Penguin Classics, 2008. Bridget Johnston Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, School of Health Sciences, The University of Nottingham, Nottingham, UK Corresponding author: Bridget Johnston, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, School of Health Sciences, The University of Nottingham, Queen’s Medical Centre, Nottingham NG7 2HA, UK. Email: [email protected]
Downloaded from pmj.sagepub.com at TEXAS A & M INTL UNIV on March 15, 2015
