Transcript Palliative Care in Heart Failure

Palliative Care in Heart Failure
Chronic Heart Failure: Transition to Palliative Care
Mona Hawkins RN, MN
Clinical Nurse Specialist
Heart Failure Management Programme
Hutt Valley District Health Board
Heart Failure…what we know
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Poor prognosis and high morbidity
Unpredictable illness trajectory
Increasing burden on society
High prevalence of sudden death
• Most want to be cared for and die in their own homes if possible
• More likely to die in a hospital setting and less likely to receive coordinated
social and palliative care services
• Less likely to have discussed end of life issues with a health professional
1.0
0.9
0.8
0.7
0.6
0.5
0.4
0.3
0.2
0.1
0.0
Women
1.0
0.9
0.8
0.7
Breast
0.6
0.5
MI
0.4
Bowel
0.3
Ovarian
Heart Failure 0.2
0.1
Lung
0.0
Men
Survival (%)
Survival (%)
Five year survival after hospitalisation
MI
Bladder
Prostate
Bowel
Heart Failure
Lung
0 6 12 18 24 30 36 42 48 54 60
0 6 12 18 24 30 36 42 48 54 60
Month of follow-up
Month of follow-up
Stewart et al Eur J Heart Fail 2001
New recommendation- ‘sneak preview
“All patients with end-stage heart failure
resistant to optimal heart failure therapy should
be offered a palliative care approach” NHF Heart
Failure Management Guidelines, 2009
<50 percent of HF Services NZ are linked to a PC
service (9/21 DHBs)
Supporting evidence
“ there is substantial evidence for
considerable unmet palliative needs of
patients with heart failure and their informal
carers. The main areas of need include
symptom control, psychological and social
support, planning for future, and end of life
care” NICE UK, 2004 statement
Symptoms in the final year of life
• Psychological or other non-cardiac
symptoms were often the most distressing
• Hospitalisation provided sub-optimal or
negligible symptom relief in majority of
patients
• In about one third of cases, management
plans ignored the patient’s wishes
Palliative Care in Heart Failure
• Does not replace optimal HF management
• Offers a support system to help people live as
actively as possible until death
• Prevents and relieves suffering
• Incorporates a holistic approach, including
physical, psychosocial, emotional and spiritual
domains of care
• Facilitates discussions regarding advance care
planning and end of life decision making
Transition
Disease Specific Management
Palliative and supportive care
Challenges
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Mortality difficult to predict
Societal pressure
Competing for limited resources
Unfamiliarity with palliative care/heart
failure management
• Ethical issues, values and beliefs
• Innovative models of care
Unpredictable illness trajectory
Functional
Disability
or
Severity of
Illness
LungCancer
Clear Phase of Decline-Allows PC Referral
Chronic
Heart Failure
Death Unpredictable--No Clear Decline Path
Time
Source: Lynn et al. American Center to Improve Care of the Dying
(with permission) in Davidson et al JCVN 2004.
Death
Values & beliefs, or lack of mutual
understanding
“I’m not sure if we can really offer them anything
and gee it’s so hard to predict when they are going to
die…and we are already swamped!”
“I’m not referring to palliative carethey will stop all the medications,
start morphine and they will be dead in two days!”
Procare, 2004
What do patients want?
informed and forewarned
“…but he was doing so well, the best he’s been for a
long time. I didn’t expect him to die. I just didn’t
know what to do”
[spouse of a 56 yr old, on her husband’s sudden
death. Collapsed [cardiac arrested] while “joking”
with his wife. Six month diagnosis of severe
cardiomyopathy on presenting with acute LVF
and pre-syncopal episodes. Documented runs of
VT on ECG]
patient ‘control’ and choice
“ I didn’t like the nurses’ atttitude. I can tell they didn’t approve of
what I was doing [daily weighs, taking so many medications]. They
just didn’t want to listen”
[Pt in final phase of end-stage CHF. She had kept
reasonable QOL due mainly to vigilant selfmonitoring & management despite being
diagnosed with advanced/end-stage CHF 10 yrs
earlier. She was discharged by the PC because
“she did not appreciate” their services”, 2008]
flexible care, individual needs
• “ why can’t they give it [ IV frusemide] to me
at home or the hospice. Heck, I’ll do it [inject]
myself. I don’t want to go to hospital because
I’ll end up spending Christmas there and I
can’t think of anything worse!”
[a frustrated patient under PC dreading the
thought of another hospital admission for
resistant oedema, few days before
Christmas, 2008]
quality of life…from their
perspective
“ Quality of life for me is being alive. There is
nothing after death”
[78 yr old male, severe end-stage IHD & fully
dependant, on being advised of the futility
of full CPR resusc attempts next time his
heart stops. He survived longer than his
carer could cope with, and was transferred
to permanent care]
start low and go slow
“ I don’t mind being here after all. The staff
are really nice and all that, but I wish they
didn’t talk so much about death”
[a ‘reluctant’ patient on his first hospice
respite care, 2003]
Palliative Care...
• is an important component in the management of heart
failure
• should be offered in parallel with optimal heart failure
management
• is best delivered through an integrated approach
recognising the role of both cardiac and PC specialists
• is provided according to individual need and is appropriate
whether death is days, weeks, months or occasionally years
away
• Specialist nurses have a key role in bridging gap between
specialities
Key ingredients for life-limiting conditions
• Shared care & expertise, flexible care for best
possible outcomes
• Mutual respect and understanding
• Need research into needs of local community
• Promote ‘control’ and choice for patients and
carers