Dr Phil McCarvill, Head of Policy and Public Affairs at Marie Curie Cancer Care spoke on 8 July 2014 on ‘Difficult Conversations – The Views of Terminally Ill People & Their Families’. We are continuing to increase our understanding of experiences of end of life using evidence including the Marie Curie Atlas, independent evaluations, user, patient and carer feedback and social media. Here in his presentation, Dr McCarvill lays out difficult conversation themes that he revealed during interview processes with terminally ill patients, their family members and carers. The themes of a good death, the journey, the family, the system and the carers are presented to encourage communication to help us ensure the right care for terminally ill people and their families. For more information on commissioning, have a look at our website mariecurie.org.uk/commissioning or get in touch at servicedevelopment@mariecurie.org.uk

1. DIFFICULT CONVERSATIONS – THE
VIEWS OF TERMINALLY ILL PEOPLE &
THEIR FAMILIES
Dr Phil McCarvill
8th
July 2014 @MarieCuriePA

2. MARIE CURIE
• Major UK end of life charity
• Major service provider – Network of 2000 Nurses caring for
people in the last few hours and days of life – 1.3 million
hours of nursing in 2012-13
• 9 hospices across the UK reach 8,000 people each year
• Our services reached a total of 38,777 people in 2012-13
• Major funder of academic and health service research with an
Open Access research policy
• Working to influence policy and practice through our policy
and public affairs work.

3. DELIVERING HIGH QUALITY SERVICES

4. UNDERSTANDING THE EVIDENCE: MARIE CURIE
END OF LIFE CARE ATLAS
4

5. DEMONSTRATING IMPACT – INDEPENDENT
EVALUATIONS
5

6. USING EVIDENCE: USER FEEDBACK
6

7. USING SOCIAL MEDIA

8. TALKING TO TERMINALLY ILL PEOPLE AND
THEIR FAMILIES

9. DIFFICULT CONVERSATIONS
• We wanted to test the idea that you can not carry out
research with terminally ill people
• Conducted in-depth interviews with terminally ill people
(different diagnoses), their carers and bereaved relatives
• Focus on experiences of care: what worked & what’s
missing?
• These were difficult conversations, but, ultimately they
provide a much-needed reality check
• Will help us ensure the right care for terminally ill people
and their families
• Failure to do so means that an individual dies in
discomfort or pain & family can be left with regrets, guilt
and unanswered questions. 9

10. DIFFICULT CONVERSATIONS – KEY THEMES
– A GOOD DEATH
• Little understanding of the specific concept of planning a
‘good death’
• Most people understood what the key aspects of care and
support that can help to ensure a good death are. Being
comfortable, pain-free, in a familiar place and surrounded
by friends and families were all identified
• Perceptions often shaped by previous negative
experiences or accounts from friends and family
• Even where people had planned their ideal could be
thwarted by unforeseen developments & lack of available
services.
10

11. DIFFICULT CONVERSATIONS: A GOOD
DEATH
I always said when I die I don’t want to die at home, I
want to die, if possible, in a hospice. I don’t want to put on
anybody the burden of having to look after me at home
and I think if I can go to a hospice if there is a place then …
I’d be much happier. - Person with cancer
11

12. DIFFICULT CONVERSATIONS: THE
JOURNEY
• The journey from terminal diagnosis to death is different
for everyone. No two deaths are the same and no two
families’ experiences are identical
• For some the journey is measured in weeks and months,
for others it lasts many years
• Different conditions – different journeys, but common
experiences particularly in last few days
• Families highlight absence of a road map – what can you
expect and what support is available?
12

13. DIFFICULT CONVERSATIONS: THE
JOURNEY
So unfortunately it’s definitely progressed quite
aggressively in the last 10 years. I’ve just had eight days in
hospital in February with a UTI and I must say the time I
spent in the hospital was very difficult and it’s always, ‘is
this the one that’s going to get me?’ — i.e. the infection.
Person with MS
13

14. THE DIFFICULT CONVERSATIONS
• For many people, talking about death and dying is difficult
• Lack of experience & fear about what lies ahead
• One or both parties may be in denial
• No talking – no care planning
• Key role of health and social care professionals, but
quality of conversations is variable
• Importance of advance planning for people with cognitive
degenerative conditions.
14

15. DIFFICULT CONVERSATIONS
The doctors were very clear it was terminal, and straight
after he was told he wanted to have a conversation with
me about his pension, getting things in order, so I know
he understood he was dying. But I was too upset to
discuss things like that then, and after that he never
wanted to talk about it even when I tried to open a
conversation …. All we had was small talk.
Bereaved carer – husband with cancer
15

16. DIFFICULT CONVERSATIONS: THE FAMILY
• A terminal diagnosis brings major upheavals for
individuals and families
• Roles change
• Major decisions to be made
• Those involved often seek to protect one another from
upset and stress
• Individuals want a whole family approach which reflects
the needs, concerns and uncertainties of both terminally
people and those around them.
16

17. DIFFICULT CONVERSATIONS: THE FAMILY
We carried her from the bedroom downstairs to the
family room where we had a hospital bed in the daytime…
she was not conscious. Even so we were all just around
there with her…
Bereaved carer – daughter with cancer
17

18. DIFFICULT CONVERSATIONS: THE
SYSTEM
• Perception – system is not built around the needs of
terminally ill people and their families
• The division between health and social care services,
number of different services and providers & lack of 24/7
services create a ‘fog’ of confusion
• Real differences in services available to people with
different conditions
• Terminally ill people and their families find it difficult to
navigate the system
• Many people do not know who does what, when and
where.
18

19. DIFFICULT CONVERSATIONS: THE
SYSTEM
Each time I go to an appointment I think they’re going
to tell me something that will show me the way
clearly… it’s just bewildering … I can’t get to the
bottom of it.
Person with Parkinson’s
19

20. DIFFICULT CONVERSATIONS: THE
CARERS
• Many family members take on new caring roles
• For caring can become all-consuming at the expense of
carers’ own wellbeing
• Carers experience a parallel journey
• For many caring is also a uniquely fulfilling experience,
bringing the terminally ill person and carer closer
together and, for some, making the bereavement process
more bearable.
20

21. DIFFICULT CONVERSATIONS: THE
CARERS
I was very grateful for that three months … I feel very
proud of myself. Proud I did that for Mum.
Bereaved carer – mother with cancer
21

22. PUTTING TERMINALLY ILL PEOPLE &
THEIR FAMILIES AT THE CENTRE
• Context – Leadership Alliance – Five Priorities for Care
• As we redesign end of life care to meet the twin
challenges of demographic change and financial
pressures, we must ensure that build services around
what terminally ill people and their families need, not
what makes sense to those providing services
• Greater support to enable families to have the difficult
conversations
• Support people to die in the place of their choice, pain-
free and surrounded by the people who matter.
• Download the report & follow @MarieCuriePA for
updates 22

23. THANK YOU
FOR YOUR TIME