The SPAR Project

1. The SPAR Project Palliative Care for Residential Care Home Residents Lorna Reid

2. I am not sure completely sure what palliative care is. When you hear the term “Palliative Care” I wonder what springs to mind. There is significant confusion over terminology in the health and social care world – Palliative care End of life care Supportive care Terminal care Specialist palliative care/General palliative care Palliative approach to care In speaking to local care home staff I have discovered that often what is understood by palliative care is care of the dying person. And more specifically, care of the person who is dying of cancer. However, it is much bigger than that. Palliative care is a new speciality and an evolving concept historically associated with cancer care, but the principles are now recognised as being applicable to any person with a life-limiting illness cancer end stage heart failure end stage renal failure dementia multiple sclerosis motor neurone disease When you hear the term “Palliative Care” I wonder what springs to mind. There is significant confusion over terminology in the health and social care world – Palliative care End of life care Supportive care Terminal care Specialist palliative care/General palliative care Palliative approach to care In speaking to local care home staff I have discovered that often what is understood by palliative care is care of the dying person. And more specifically, care of the person who is dying of cancer. However, it is much bigger than that. Palliative care is a new speciality and an evolving concept historically associated with cancer care, but the principles are now recognised as being applicable to any person with a life-limiting illness cancer end stage heart failure end stage renal failure dementia multiple sclerosis motor neurone disease

3. Dame Cicely Saunders “you matter because you are you. You matter to the last moment of your life and we will do all we can, not only to help you die peacefully, but also to help you live until you die.” Modern palliative care began with a nurse. Cicely Saunders trained as a nurse re-trained as a medical social worker 1940’s met “David Tasma” who was dying from cancer Focus of care was very much on “cure” Did not quite know what to do with him...end of a nightingale ward Many frank discussions about his needs how people might be cared for when dying need for comfort need to be heard need to be free from pain and other distressing symptoms need to know that someone to care for their loved one’s after they were gone Out of those conversations the idea of a “home” for the dying was born David died – left £500 At the age of 33 retrained yet again as a medical doctor and became the first medic in modern times to dedicate her career to caring for those at the end of life. Philosophy of palliative care enshrined in her statement...”you matter...” Does not end there – Dame C.S opened her “home”. She came out of mainstream care to develop a new model of care the knowledge and the skills and the attitudes which would become palliative care with every intention that the knowledge, skills and attitudes which were developed Would make their way back into mainstream care. Modern palliative care began with a nurse. Cicely Saunders trained as a nurse re-trained as a medical social worker 1940’s met “David Tasma” who was dying from cancer Focus of care was very much on “cure” Did not quite know what to do with him...end of a nightingale ward Many frank discussions about his needs how people might be cared for when dying need for comfort need to be heard need to be free from pain and other distressing symptoms need to know that someone to care for their loved one’s after they were gone Out of those conversations the idea of a “home” for the dying was born David died – left £500 At the age of 33 retrained yet again as a medical doctor and became the first medic in modern times to dedicate her career to caring for those at the end of life. Philosophy of palliative care enshrined in her statement...”you matter...” Does not end there – Dame C.S opened her “home”. She came out of mainstream care to develop a new model of care the knowledge and the skills and the attitudes which would become palliative care with every intention that the knowledge, skills and attitudes which were developed Would make their way back into mainstream care.

4. The Hospice Movement St. Christopher's Hospice was opened in 1967 and the hospice movement was born. According to Help the Hospices there are now 220 in patient units with 3,200 beds 314 home care services 106 hospice at home services 208 day care services 340 hospital support services. Relatively young movement, seen quite dramatic growth. St. Christopher's Hospice was opened in 1967 and the hospice movement was born. According to Help the Hospices there are now 220 in patient units with 3,200 beds 314 home care services 106 hospice at home services 208 day care services 340 hospital support services. Relatively young movement, seen quite dramatic growth.

5. Physical What is palliative care all about? Need to start by thinking: What is a person? Physical body: Made up of cells and systems such as: Nervous system Digestive system Excretory system Circulatory system Lymphatic system More than a biological machine... What is palliative care all about? Need to start by thinking: What is a person? Physical body: Made up of cells and systems such as: Nervous system Digestive system Excretory system Circulatory system Lymphatic system More than a biological machine...

6. Social Is that all? Human beings are social beings. Relationships are important to us. That is why putting someone in solitary confinement is a punishment of some kind. We don’t tend to do well in isolation. If our physical body is not working as well as we would like. If we are in pain If we are feeling sick our relationships can suffer. Don’t have the energy Don’t have the patience Is that all? Human beings are social beings. Relationships are important to us. That is why putting someone in solitary confinement is a punishment of some kind. We don’t tend to do well in isolation. If our physical body is not working as well as we would like. If we are in pain If we are feeling sick our relationships can suffer. Don’t have the energy Don’t have the patience

7. Emotional We all have an emotional aspect. Feel all these emotions to varying degrees at different times in our lives Our emotional state impacts how we relate to others If I am sad, I may not want to see other people If I am angry, they may not want to see me We all recognise that our emotions effect our ability to make and keep relationships We understand that emotions can also impact our mental and physical health Feeling happy and loving leads to quite different consequences Than feeling angry and scared. We all have an emotional aspect. Feel all these emotions to varying degrees at different times in our lives Our emotional state impacts how we relate to others If I am sad, I may not want to see other people If I am angry, they may not want to see me We all recognise that our emotions effect our ability to make and keep relationships We understand that emotions can also impact our mental and physical health Feeling happy and loving leads to quite different consequences Than feeling angry and scared.

8. Spiritual We all have a spiritual dimension Includes having some understanding of who we are, and what our purpose in life is. Includes our ability to give and receive love. What nourishes and feeds the innermost core of who we are What we think will happen to us after our body dies. What we put our faith in God ourselves other people material possessions When people are ill Their ability to give and receive love might be impacted. They may begin to feel regret or guilt about how they have lived their lives They might begin to question what their life means, or if they have been true to what they believed their purpose to be. Why is this happening to them They may begin to question who or what they put their faith in They may feel at peace They may feel as though a rug has been pulled out from under them feel very distressed. We all have a spiritual dimension Includes having some understanding of who we are, and what our purpose in life is. Includes our ability to give and receive love. What nourishes and feeds the innermost core of who we are What we think will happen to us after our body dies. What we put our faith in God ourselves other people material possessions When people are ill Their ability to give and receive love might be impacted. They may begin to feel regret or guilt about how they have lived their lives They might begin to question what their life means, or if they have been true to what they believed their purpose to be. Why is this happening to them They may begin to question who or what they put their faith in They may feel at peace They may feel as though a rug has been pulled out from under them feel very distressed.

9. The palliative journey May begin at diagnosis Often has three phases Stable Deteriorating Dying Unfortunately not all diseases can be cured. Does not mean that there is nothing which can be done to help a person live as well as they can For as long as they can. It is important to state that palliative care is It is an approach to care A philosophy of care Based on the attitudes and skills of those who are delivering it. Attitudes such as compassion, conscience, commitment, courage Skills such as communication skills, advocacy skills, team working skills symptom management skills It can be delivered anywhere. Unfortunately not all diseases can be cured. Does not mean that there is nothing which can be done to help a person live as well as they can For as long as they can. It is important to state that palliative care is It is an approach to care A philosophy of care Based on the attitudes and skills of those who are delivering it. Attitudes such as compassion, conscience, commitment, courage Skills such as communication skills, advocacy skills, team working skills symptom management skills It can be delivered anywhere.

10. A palliative approach Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

11. The aims of palliative care To provide relief from pain and other distressing symptoms What does palliative care have to offer the older person? The word palliate comes from the latin “pallium” which means to cover, or to cloak. May not be able to cure their diseases can help to manage their symptoms Their physical symptoms Their emotional symptoms Their spiritual symptoms and their social symptoms A bit of a tall order, but Palliative care seeks to: to cover the effects of disease minimise suffering and distress So that a person can have the best quality of life for as long as possible. What does palliative care have to offer the older person? The word palliate comes from the latin “pallium” which means to cover, or to cloak. May not be able to cure their diseases can help to manage their symptoms Their physical symptoms Their emotional symptoms Their spiritual symptoms and their social symptoms A bit of a tall order, but Palliative care seeks to: to cover the effects of disease minimise suffering and distress So that a person can have the best quality of life for as long as possible.

12. The aims of palliative care Integrates the psychological and spiritual aspects of patient care Often the physical aspects of care are reasonably well managed Psychological and spiritual aspects are not always so obvious or so “easy” to manage. Unsettling questions come to the surface... Why is this happening to me? Why did God let this happen? How will I cope? Questions also surface relating to concepts such as core identity and self-worth Now I am sick and in a care home, who am I? Palliative care is about supporting people as they re-orientate themselves. learn to live with the various losses their illness has brought find strength to make a new meaning...to grow... Not a quick process...no pill to fix it... Often the physical aspects of care are reasonably well managed Psychological and spiritual aspects are not always so obvious or so “easy” to manage. Unsettling questions come to the surface... Why is this happening to me? Why did God let this happen? How will I cope? Questions also surface relating to concepts such as core identity and self-worth Now I am sick and in a care home, who am I? Palliative care is about supporting people as they re-orientate themselves. learn to live with the various losses their illness has brought find strength to make a new meaning...to grow... Not a quick process...no pill to fix it...

13. The aims of palliative care Offers a support system to help patients live as actively as possible until death The process of helping people to remain as active as possible is not easy when you are dealing with advancing disease. Because it is not easy...does not mean it is not achievable... Unless a person dies suddenly they will become increasingly dependent on others. Don’t want people being dependent while they are still able to do some things for themselves. Promoting independence for as long as possible ...helps improve feelings of being in control ...helps people feel like less of a burden. The process of helping people to remain as active as possible is not easy when you are dealing with advancing disease. Because it is not easy...does not mean it is not achievable... Unless a person dies suddenly they will become increasingly dependent on others. Don’t want people being dependent while they are still able to do some things for themselves. Promoting independence for as long as possible ...helps improve feelings of being in control ...helps people feel like less of a burden.

14. The aims of palliative care Will enhance quality of life, and may also positively influence the course of illness

15. The aims of palliative care Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated No one person has all the knowledge all the skills all the time To meet all the physical needs and the emotional needs and the social needs and the spiritual needs of palliative patents and their family members Palliative care seeks to take a team approach Patient being the most important member of the team Once a patient who had very difficult symptoms Pain Nausea and vomiting Not sleeping Sore mouth Constipated HCP may be tempted to start with pain Asked gentleman If we could help you at the moment what would make the most difference Like to see my son Estranged for 15 years Our priorities may not be the patient’s priorities No one person has all the knowledge all the skills all the time To meet all the physical needs and the emotional needs and the social needs and the spiritual needs of palliative patents and their family members Palliative care seeks to take a team approach Patient being the most important member of the team Once a patient who had very difficult symptoms Pain Nausea and vomiting Not sleeping Sore mouth Constipated HCP may be tempted to start with pain Asked gentleman If we could help you at the moment what would make the most difference Like to see my son Estranged for 15 years Our priorities may not be the patient’s priorities

16. The aims of palliative care Offers a support system to help the family cope during the patient’s illness and in their own bereavement. A palliative approach to care includes taking care of families. Family issues can include things like loss of role the burden of care-giving/exhaustion their own frailty distress anxiety anger/guilt social isolation related to visiting a care facility on a regular basis A palliative approach to care includes taking care of families. Family issues can include things like loss of role the burden of care-giving/exhaustion their own frailty distress anxiety anger/guilt social isolation related to visiting a care facility on a regular basis

17. The aims of palliative care: To affirm life and regard dying as a normal process Palliative care Cherishes life...good to be alive At the same time we say that dying is a normal process. People today have less personal experience of death and dying... there is the notion that it can be conquered. Improved treatments mean that we can live longer with diseases. Difficult as it is... If our only goal is to keep people alive...we risk prolonging a person’s dying There is a time to hold on...and there is a time to let go. Not an easy position to hold Careful thinking... honest discussion... Ethical decision making skills Palliative care Cherishes life...good to be alive At the same time we say that dying is a normal process. People today have less personal experience of death and dying... there is the notion that it can be conquered. Improved treatments mean that we can live longer with diseases. Difficult as it is... If our only goal is to keep people alive...we risk prolonging a person’s dying There is a time to hold on...and there is a time to let go. Not an easy position to hold Careful thinking... honest discussion... Ethical decision making skills

18. The aims of palliative care Intends neither to hasten nor postpone death Intends neither to hasten, or speed up the process of dying In other words it does not endorse euthanasia, or physician assisted suicide. It intends not to postpone, or prolong a person’s dying. Again a very difficult position to hold brings to the fore the need for good ethical decision making. Antibiotics could be said to postpone death at times they may be an appropriate therapy at times they may not be appropriate option What would this person want? What is in their best interests? What is going to prevent harm? Is this person being treated in the same way as other similar cases? In other words, is the treatment fair? Complex and difficult discussion. Not like a crossword puzzle which only has one right answer. These kind of problems don’t have any easy answers. Intends neither to hasten, or speed up the process of dying In other words it does not endorse euthanasia, or physician assisted suicide. It intends not to postpone, or prolong a person’s dying. Again a very difficult position to hold brings to the fore the need for good ethical decision making. Antibiotics could be said to postpone death at times they may be an appropriate therapy at times they may not be appropriate option What would this person want? What is in their best interests? What is going to prevent harm? Is this person being treated in the same way as other similar cases? In other words, is the treatment fair? Complex and difficult discussion. Not like a crossword puzzle which only has one right answer. These kind of problems don’t have any easy answers.

19. Now I understand... Palliative care is about: Promoting a good quality of life. Good symptom management. Honest and supportive communication. Looking after families. Working together.

20. Palliative needs are not always identified Around 55,000 people die in Scotland each year Around 11,000 of them in care homes Audit Scotland suggested that around 42,000 of that number could benefit from some form of palliative care during the final phase of their life – which should not only be seen in terms of hours or days, but in terms of months and perhaps years. However, In 2007 only 5,000 patients were included on GP palliative care registers . So, only 12% of those with potential palliative care needs had those needs identified and recorded by their GP. The low numbers may be due to difficulty in identifying when patients may need or benefit from palliative care, particularly with patients who have a non-cancer diagnosis. Around 55,000 people die in Scotland each year Around 11,000 of them in care homes Audit Scotland suggested that around 42,000 of that number could benefit from some form of palliative care during the final phase of their life – which should not only be seen in terms of hours or days, but in terms of months and perhaps years. However, In 2007 only 5,000 patients were included on GP palliative care registers . So, only 12% of those with potential palliative care needs had those needs identified and recorded by their GP. The low numbers may be due to difficulty in identifying when patients may need or benefit from palliative care, particularly with patients who have a non-cancer diagnosis.

21. Palliative Care in Care Homes One in five people over sixty five will spend their final years in a care home. In this area there are 35 known care homes with approx 2,000 residents being looked after by approx 2,500 care home staff. Since coming in to post in April 2009, I have spoken with 26 care home managers and 2 practice development nurses. In percentage terms spoken with 80% of managers. Given me a good feel for how the land lies with them Start to build good working relationships. One in five people over sixty five will spend their final years in a care home. In this area there are 35 known care homes with approx 2,000 residents being looked after by approx 2,500 care home staff. Since coming in to post in April 2009, I have spoken with 26 care home managers and 2 practice development nurses. In percentage terms spoken with 80% of managers. Given me a good feel for how the land lies with them Start to build good working relationships.

22. Significant Challenges Important to recognise some of the significant challenges in this care sector. Staff turnover Studies have suggested that the general turnover in care homes is quite high. Since I have been in post. 11 out of 28 managers I spoke with on initial visit have moved on Just under 40% Constant changes bring obvious challenges in terms of maintaining quality of care and focused, consistent leadership. We are in the fortunate position to be able to deliver fantastic care to patients To give you an insight into the difference in terms of access to services I want to tell you about a recent working day We had a patient in the IPU here with very complex needs She needed to have a not so common intervention Staff needed to be competent in caring for patient 3 Consultants, Our own 3 consultants, a number of nurses from IPU, a significant number of DN’s for a morning’s training. In the afternoon I went to visit a local CH manager The day before she had a lady who was at the end of her life She was in pain She was distressed. The manager asked the GP to come and review this lady, and review her medication. The GP told her that to come and see this lady would be a waste of his time, as there was nothing that he could do. The care home manager waiting till NHS 24 service kicked in Died fairly peacefully Both these cases are probably a-typical Highlights the inequity of access to services for people in care homes Important to recognise some of the significant challenges in this care sector. Staff turnover Studies have suggested that the general turnover in care homes is quite high. Since I have been in post. 11 out of 28 managers I spoke with on initial visit have moved on Just under 40% Constant changes bring obvious challenges in terms of maintaining quality of care and focused, consistent leadership. We are in the fortunate position to be able to deliver fantastic care to patients To give you an insight into the difference in terms of access to services I want to tell you about a recent working day We had a patient in the IPU here with very complex needs She needed to have a not so common intervention Staff needed to be competent in caring for patient 3 Consultants, Our own 3 consultants, a number of nurses from IPU, a significant number of DN’s for a morning’s training. In the afternoon I went to visit a local CH manager The day before she had a lady who was at the end of her life She was in pain She was distressed. The manager asked the GP to come and review this lady, and review her medication. The GP told her that to come and see this lady would be a waste of his time, as there was nothing that he could do. The care home manager waiting till NHS 24 service kicked in Died fairly peacefully Both these cases are probably a-typical Highlights the inequity of access to services for people in care homes

23. Average length of stay is 12-18 months Because they are older and sicker on admission average length of stay is between 12-18 months so could argue that all care home residents are will have palliative needs Thinking in terms of everyone in the care home as being on the palliative journey can be helpful recognition that this is a home for life gets away from thinking about palliative care as only about managing death helping people to live as well as they can for as long as they can ensuring appropriate levels of support at each stage of the process Because they are older and sicker on admission average length of stay is between 12-18 months so could argue that all care home residents are will have palliative needs Thinking in terms of everyone in the care home as being on the palliative journey can be helpful recognition that this is a home for life gets away from thinking about palliative care as only about managing death helping people to live as well as they can for as long as they can ensuring appropriate levels of support at each stage of the process

24. The “head, hands and heart” of palliative care Head We need good knowledge We need good clinical competence We need to know “What” to do The heart We need to give compassionate care We need to respond with humanity to those in our care The heart is the human response to the suffering of another...it is the “why” we bother...why we do what we do What we are speaking about today are the hands The how to do it What process can we use How can we make sure that our care is organised and our communication is goodHead We need good knowledge We need good clinical competence We need to know “What” to do The heart We need to give compassionate care We need to respond with humanity to those in our care The heart is the human response to the suffering of another...it is the “why” we bother...why we do what we do What we are speaking about today are the hands The how to do it What process can we use How can we make sure that our care is organised and our communication is good

25. SPAR project Recognising these barriers we are forming I am working with a local GP and three local care homes Put in a system to facilitate Better co-ordination Better communication Improved delivery Of palliative care for residents in the care home setting. Recognising these barriers we are forming I am working with a local GP and three local care homes Put in a system to facilitate Better co-ordination Better communication Improved delivery Of palliative care for residents in the care home setting.

26. How? Include all residents in the care home on the supportive, palliative action register (SPAR) Green Amber Red Green: no major changes in physical or mental status care needs remain stable review every month continue to provide optimum management of LTC assessing and monitoring symptoms Amber: signs of decline falls infection weight loss gradual decline Discuss deterioration and potential outcomes with family not exact science may improve may plateau may continue to deteriorate consider discussing options and preferences consider (if appropriate) discussing ACP DNA-CPR consider out of hours handover (Ask GP on register) continue to assess and monitor symptoms review residents who are in the amber section weekly (or sooner) Red: day by day deterioration as above lack of interest in life consider (as above) reviewed daily (or sooner) If clinical judgement indicates resident is dying commence pathway for the dying person Green: no major changes in physical or mental status care needs remain stable review every month continue to provide optimum management of LTC assessing and monitoring symptoms Amber: signs of decline falls infection weight loss gradual decline Discuss deterioration and potential outcomes with family not exact science may improve may plateau may continue to deteriorate consider discussing options and preferences consider (if appropriate) discussing ACP DNA-CPR consider out of hours handover (Ask GP on register) continue to assess and monitor symptoms review residents who are in the amber section weekly (or sooner) Red: day by day deterioration as above lack of interest in life consider (as above) reviewed daily (or sooner) If clinical judgement indicates resident is dying commence pathway for the dying person

27. How? Regular discussion within the care home. Regular discussion with other health and social care professionals. Identifying changing needs and anticipating care. Proactive measures Often deterioration is so gradual that it is difficult to recognise Regular review focus attentionOften deterioration is so gradual that it is difficult to recognise Regular review focus attention

28. How? Identifying key person(s) to coordinate care and maintain the register. All assume someone else is taking care of issues key person knows that it is part of their normal responsibilities built in to the routine of the homeAll assume someone else is taking care of issues key person knows that it is part of their normal responsibilities built in to the routine of the home

29. How? Promoting the use of recognised tools: Assess symptoms Improve communication Help to inform care Educate staff To identify issues To record and communicate To assess physical problems To assess emotional, social, spiritual and practical problems Recognise when to ask for help from specialists To anticipate needs and plan appropriately discuss preferred options have equipment in place sooner rather than later to have drugs on site to have a plan of action to have the dying phase planned (as much as possible) plan of pro active support – knowing who to contact To identify issues To record and communicate To assess physical problems To assess emotional, social, spiritual and practical problems Recognise when to ask for help from specialists To anticipate needs and plan appropriately discuss preferred options have equipment in place sooner rather than later to have drugs on site to have a plan of action to have the dying phase planned (as much as possible) plan of pro active support – knowing who to contact

30. How? Promoting a culture of learning and reflection: Recognising success Celebrating teamwork Identifying gaps Forging stronger links Generalists Specialists By reflecting and listening to patients, families and staff memebers We learn what we have done well in the past what we can do better in the future Improve staff moral Respond to gaps By reflecting and listening to patients, families and staff memebers We learn what we have done well in the past what we can do better in the future Improve staff moral Respond to gaps

31. Companions on the journey “The essential concept is that the team will stay firmly with the patient and relatives at their time of need and not desert them” Man caring for his dying wife. Learning how to care for our aging population may be our greatest calling Can we rise to the challenge? Can we travel with them Help to meet their needs Can we promote a sense of security for older people and their families than we know what we are doing that we care about them that we will do all we can to help and support them Can we look after ourselves as we attempt to engage in this work Good palliative care is appreciated by patients and families It is the core of good care of the older person May be the best thing that we achieve Learning how to care for our aging population may be our greatest calling Can we rise to the challenge? Can we travel with them Help to meet their needs Can we promote a sense of security for older people and their families than we know what we are doing that we care about them that we will do all we can to help and support them Can we look after ourselves as we attempt to engage in this work Good palliative care is appreciated by patients and families It is the core of good care of the older person May be the best thing that we achieve

32. Live Engaging in this kind of work will stretch us to the limit Takes enormous amount of compassion In the end we can, if we open ourselves to the messages we see lived out before us, receive greater wisdom “By listening to people in the end stages of life, all of us learned What we should have done differently in the past What we could do better in the future The lessons boiled down to the same message: Live so that you don’t look back and regret that you’ve wasted your life. Live so you don’t regret the things you have done Or wish that you had acted differently Live honestly and fully Live Engaging in this kind of work will stretch us to the limit Takes enormous amount of compassion In the end we can, if we open ourselves to the messages we see lived out before us, receive greater wisdom “By listening to people in the end stages of life, all of us learned What we should have done differently in the past What we could do better in the future The lessons boiled down to the same message: Live so that you don’t look back and regret that you’ve wasted your life. Live so you don’t regret the things you have done Or wish that you had acted differently Live honestly and fully Live