Understanding and using hope with

patients and families

Mr. R BeckerMacmillan Senior Lecturer in Palliative CareStaffordshire University & Severn Hospice Shropshire

Online lecture - Feb 3rd 2009Online lecture - Feb 3rd 2009

Learning Outcomes: Learning Outcomes:

• Understand the concept of hope as a lived experience for the dying and their families.

• To view hope as a core underpinning concept in the practice of palliative care.

• To explore hope frameworks and their potential in clinical practice

• I hope this teaching session is worth listening to

• I hope the lunch is good• I hope I will see my children grow up• I hope to have a long and happy retirement• I hope to learn to drive• I hope to win the lottery• I hope it doesn't rain• I hope I don't die of cancer

Hope and it's relationship to timeHope and it's relationship to timeHope and it's relationship to timeHope and it's relationship to time

“Hopes are rising, but I wouldn’t count on catching

a train to London tomorrow.”

Network Rail spokesperson, Christmas

2007. UK

““choose hope choose hope over fear”over fear”

President Barack Obama 2009

““choose hope choose hope over fear”over fear”

President Barack Obama 2009

““Abandon Abandon hope all who hope all who enter here.” enter here.”

An image of An image of hell taken from hell taken from

Dante’s Dante’s Inferno.Inferno.

““Abandon Abandon hope all who hope all who enter here.” enter here.”

An image of An image of hell taken from hell taken from

Dante’s Dante’s Inferno.Inferno.

• Menninger (1959) - identified hope's relevance to the treatment of patients with psychiatric disorders

• Menninger (1959) details similar experiences of doctor/prisoners in Buchenwald concentration camp.

• Frankl V(1963) hope and suffering within the Nazi concentration camps

Defining Hope

Defining Hope• Beck & Weissman (1974) Cutcliffe (1998) & Moore (2005)

– hope in a mental health context.

• Hickey (1986(, Hinds & Martin (1988), Herth (2000) – studied hope as a variable in the occurrence of, and recovery from cancer

• O'Malley & Menke (1988) ) hope in relation to adaptation to chronic illness

• Duggleby & Wright 2005 studied hope in relation to the elderly

• Benzein (2005), Holtslander et al (2005). family members of the terminally ill and informal care givers

Common denominators in hope definitions

• the expectation of a better future

• the strong affective component

• the desire for something which is good and positive

• life experience and relationships with others.

Turner (2005) - looked at hope from the perspective of well young

Australians and found that relationships, choices, motivation

and belonging were the key dimensions to their lives.

Hope from a well persons perspectiveHope from a well persons perspectiveHope from a well persons perspectiveHope from a well persons perspective

Hope, in palliative care, is not based on false optimism or

reassurance but is built on the belief that better days or

moments may come in spite of the prognosis.

(Scanlon 1989)

“Hope is seen today as a multidimensional concept,

encompassing not only earthly goals, actions and relationships, but also eternal spiritual goals, actions and relationships with a divine being,

neither of which are mutually exclusive”

Becker R (2009) The teaching of hope and suffering in palliative care education. In Foyle L & Hostad J. Eds (2009) Dimensions in Cancer and Palliative Care Education, Radcliffe Press. (for publication in spring 2009)

Becker R (2009) The teaching of hope and suffering in palliative care education. In Foyle L & Hostad J. Eds (2009) Dimensions in Cancer and Palliative Care Education, Radcliffe Press. (for publication in spring 2009)

Evidence based hope fostering Evidence based hope fostering strategiesstrategies

• Empathy - Egan 2004

• Realistic goals – Poncar 1994

• Laughter – Herth 1990

• Relationships – Smith 2004

• Time alone – Herth 1993

• The value of presence - Benner & Wrubel 1989, Le May 2004

• Reminiscence work - Duggleby & Wright 2005

• Maximising life's aesthetic experiences - Becker & Gamlin 2004

Evidence based hope fostering Evidence based hope fostering strategiesstrategies

Developmental Tools & Inventories:

• Erikson (1975), Hinds (1984), Nowotny (1989) & Miller (1988) – assessment tools for use in clinical practice

• Herth's Hope Index (1992) conforms to the idea that hope is a multidimensional concept. It is in Likert format ( 1-4 scale) and is based on three factors.

1. An inner sense of temporality and the future. i.e. having goals or fearing for the future

2. An inner positive readiness and expectancy. i.e. believing life has value and worth.

3. An interconnectedness with self and others. i.e. feeling all alone or having a faith that comforts.

The Short story or VignetteThe Short story or Vignette

• Powerful strategy to enhance learning with a Powerful strategy to enhance learning with a high impact as a reflective learning tool for the high impact as a reflective learning tool for the author, listener or reader (Becker 2005)author, listener or reader (Becker 2005)

• Emotive languageEmotive language

• Scenarios are full of professional and ethical Scenarios are full of professional and ethical dilemmasdilemmas

• Hope stories based around Herth’s hope Hope stories based around Herth’s hope fostering strategies.fostering strategies.

• Powerful strategy to enhance learning with a Powerful strategy to enhance learning with a high impact as a reflective learning tool for the high impact as a reflective learning tool for the author, listener or reader (Becker 2005)author, listener or reader (Becker 2005)

• Emotive languageEmotive language

• Scenarios are full of professional and ethical Scenarios are full of professional and ethical dilemmasdilemmas

• Hope stories based around Herth’s hope Hope stories based around Herth’s hope fostering strategies.fostering strategies.

The Value of relationshipsThe Value of relationships

There she was, hidden nearly by the There she was, hidden nearly by the crisp white sheet pulled up to her nose. crisp white sheet pulled up to her nose.

Two withered hands gripped tightly to the Two withered hands gripped tightly to the edge of the sheet. Two soft bright eyes edge of the sheet. Two soft bright eyes appeared from the abyss looking at me. appeared from the abyss looking at me.

“Got a minute nurse?”. Hold my hand “Got a minute nurse?”. Hold my hand please?” she said. I asked her “Are you please?” she said. I asked her “Are you

frightened?” “No” she replied, then frightened?” “No” she replied, then silence. After about a minute she looked silence. After about a minute she looked at me and said “I had forgotten what life at me and said “I had forgotten what life

felt like.” felt like.”

There she was, hidden nearly by the There she was, hidden nearly by the crisp white sheet pulled up to her nose. crisp white sheet pulled up to her nose.

Two withered hands gripped tightly to the Two withered hands gripped tightly to the edge of the sheet. Two soft bright eyes edge of the sheet. Two soft bright eyes appeared from the abyss looking at me. appeared from the abyss looking at me.

“Got a minute nurse?”. Hold my hand “Got a minute nurse?”. Hold my hand please?” she said. I asked her “Are you please?” she said. I asked her “Are you

frightened?” “No” she replied, then frightened?” “No” she replied, then silence. After about a minute she looked silence. After about a minute she looked at me and said “I had forgotten what life at me and said “I had forgotten what life

felt like.” felt like.”

Humour and pathosHumour and pathos

Alex was a young man who was dying and Alex was a young man who was dying and he knew the score. His family was with him. I he knew the score. His family was with him. I went in to see if anyone wanted a drink. Alex went in to see if anyone wanted a drink. Alex came out with the usual corny joke and some came out with the usual corny joke and some

cheeky comment. I answered back “Any cheeky comment. I answered back “Any more of that mate and you’re dead meat”. I more of that mate and you’re dead meat”. I

just wanted the ground to open up and just wanted the ground to open up and swallow me, but Alex laughed like a drain swallow me, but Alex laughed like a drain and after a few seconds so did his family. and after a few seconds so did his family.

Alex was a young man who was dying and Alex was a young man who was dying and he knew the score. His family was with him. I he knew the score. His family was with him. I went in to see if anyone wanted a drink. Alex went in to see if anyone wanted a drink. Alex came out with the usual corny joke and some came out with the usual corny joke and some

cheeky comment. I answered back “Any cheeky comment. I answered back “Any more of that mate and you’re dead meat”. I more of that mate and you’re dead meat”. I

just wanted the ground to open up and just wanted the ground to open up and swallow me, but Alex laughed like a drain swallow me, but Alex laughed like a drain and after a few seconds so did his family. and after a few seconds so did his family.

Hope for the endHope for the end

Dawn is breaking. My guardian angels will soon Dawn is breaking. My guardian angels will soon arrive with my tablets washed down with gods arrive with my tablets washed down with gods

wine. Same vibes, different voices, another wine. Same vibes, different voices, another day. “So this is why the cream curdles and the day. “So this is why the cream curdles and the flowers never smell sweet in this room”. I sleep, flowers never smell sweet in this room”. I sleep, then wake up and the pain is there gain. Head, then wake up and the pain is there gain. Head, heart, stomach everywhere. My family look on, heart, stomach everywhere. My family look on, bemused, worried and unsure what to do. More bemused, worried and unsure what to do. More

tablets and gods wine. A kiss, a prayer – tablets and gods wine. A kiss, a prayer – maybe tonight?maybe tonight?

Dawn is breaking. My guardian angels will soon Dawn is breaking. My guardian angels will soon arrive with my tablets washed down with gods arrive with my tablets washed down with gods

wine. Same vibes, different voices, another wine. Same vibes, different voices, another day. “So this is why the cream curdles and the day. “So this is why the cream curdles and the flowers never smell sweet in this room”. I sleep, flowers never smell sweet in this room”. I sleep, then wake up and the pain is there gain. Head, then wake up and the pain is there gain. Head, heart, stomach everywhere. My family look on, heart, stomach everywhere. My family look on, bemused, worried and unsure what to do. More bemused, worried and unsure what to do. More

tablets and gods wine. A kiss, a prayer – tablets and gods wine. A kiss, a prayer – maybe tonight?maybe tonight?

Pain and SufferingPain and Suffering

Three years, that’s how long it took. Three years, that’s how long it took. Tiredness, concentration gone, the Tiredness, concentration gone, the

headaches – Oh the headaches, intense, headaches – Oh the headaches, intense, powerful, for days on end. My balance went powerful, for days on end. My balance went

next and the swollen legs got worse. next and the swollen legs got worse. Unsteady on my feet, eyes weaker, hearing Unsteady on my feet, eyes weaker, hearing poor. Just a day to day existence - you call poor. Just a day to day existence - you call that living? Doctors and consultants visit – that living? Doctors and consultants visit –

they really want to help but…. they really want to help but….

Three years, that’s how long it took. Three years, that’s how long it took. Tiredness, concentration gone, the Tiredness, concentration gone, the

headaches – Oh the headaches, intense, headaches – Oh the headaches, intense, powerful, for days on end. My balance went powerful, for days on end. My balance went

next and the swollen legs got worse. next and the swollen legs got worse. Unsteady on my feet, eyes weaker, hearing Unsteady on my feet, eyes weaker, hearing poor. Just a day to day existence - you call poor. Just a day to day existence - you call that living? Doctors and consultants visit – that living? Doctors and consultants visit –

they really want to help but…. they really want to help but….

AbandonmentAbandonment

The doctor visited and now I am in the car The doctor visited and now I am in the car being driven somewhere. My husband looks being driven somewhere. My husband looks

stern, tired and talks to me as if I am a stern, tired and talks to me as if I am a naughty child. Why does he do that? We go to naughty child. Why does he do that? We go to

this strange place with an odd smell and this strange place with an odd smell and unfamiliar faces smiling, giving me tablets and unfamiliar faces smiling, giving me tablets and asking me to lie down on a bed. Those eyes asking me to lie down on a bed. Those eyes

across the bay are following me. Where is my across the bay are following me. Where is my husband, what am I doing here and it smells husband, what am I doing here and it smells

awful. There’s nobody I know. awful. There’s nobody I know.

The doctor visited and now I am in the car The doctor visited and now I am in the car being driven somewhere. My husband looks being driven somewhere. My husband looks

stern, tired and talks to me as if I am a stern, tired and talks to me as if I am a naughty child. Why does he do that? We go to naughty child. Why does he do that? We go to

this strange place with an odd smell and this strange place with an odd smell and unfamiliar faces smiling, giving me tablets and unfamiliar faces smiling, giving me tablets and asking me to lie down on a bed. Those eyes asking me to lie down on a bed. Those eyes

across the bay are following me. Where is my across the bay are following me. Where is my husband, what am I doing here and it smells husband, what am I doing here and it smells

awful. There’s nobody I know. awful. There’s nobody I know.

PersonhoodPersonhood

John had a degenerate illness and still had all John had a degenerate illness and still had all his mental faculties, though could not his mental faculties, though could not

communicate well. His love of music shone communicate well. His love of music shone through this and he loved to play his 70’s and through this and he loved to play his 70’s and 80’s music, much to frustration of his family. 80’s music, much to frustration of his family.

He knew this, but he said to me one day “This He knew this, but he said to me one day “This is my way of saying I am still here….reach out is my way of saying I am still here….reach out

and touch me, hug me, and kiss me if you and touch me, hug me, and kiss me if you dare. I’m still here. dare. I’m still here.

John had a degenerate illness and still had all John had a degenerate illness and still had all his mental faculties, though could not his mental faculties, though could not

communicate well. His love of music shone communicate well. His love of music shone through this and he loved to play his 70’s and through this and he loved to play his 70’s and 80’s music, much to frustration of his family. 80’s music, much to frustration of his family.

He knew this, but he said to me one day “This He knew this, but he said to me one day “This is my way of saying I am still here….reach out is my way of saying I am still here….reach out

and touch me, hug me, and kiss me if you and touch me, hug me, and kiss me if you dare. I’m still here. dare. I’m still here.

Evidence based helping strategies to Evidence based helping strategies to promote hopepromote hope

• Use the skill of empathy to develop an understanding of patients and families worries, fears and doubts. Help them build upon their strengths (Egan 2004).

• Realistic attainable goals is important to our patients and is closely linked to a person’s emotional state Poncar (1994).

• Laughter – as a healthy emotion and when culturally and contextually acceptable, helps to foster positive attitudes, comforts relatives and more significantly is normality based (Becker 2003). Herth (1990)

• Relationships underpin the very essence of good palliative care. By working directly with families a close therapeutic rapport can be developed with the patient (Smith 2004).

• Opportunities to be alone (Herth 1993)

• A willingness to share part of yourself through your reassuring presence, encouragement, willingness to listen attentively, to touch and to share hopes and feelings that makes all the difference (Le May 2004& Benner & Wrubel (1989)

• The relevance and importance of maximising life's aesthetic experiences Miller (1985), Herth (1990) Poncar (1994) & Becker & Gamlin (2004)

• Other strategies can include, distraction activities, confronting the problem, redefining the problem, reminiscence work and helping the person renew his or her spiritual beliefs.

Evidence based helping strategies to Evidence based helping strategies to promote hopepromote hope

“If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that

quality that helps you go on in spite of it all. And so today I still have a

dream”.

Martin Luther King