Palliative care at the margins
Dr. Tony O’Brien
Consultant Physician in Palliative Medicine
Marymount Hospice & Cork University Hospital
School of Medicine, University College, Cork
Thursday, May 12, 2011
Foyle Hospice
• ‘We need a hospice and we need it now’
Dr. Tom McGinley, 1983
• ? Taken on too much?
– ‘like a red rag to a McGinley bull!!
• ‘First of all he only wanted about an acre, then he
wanted four acres, then we sold him the whole field’
Robert Fleming, Grand Master of the City of Londonderry Grand Orange Lodge
Building Bridges – a history of the Foyle Hospice. Dr. Keith Munro, 2005
The day the tears flowed
• Thursday June 20th, 1991
• Clare McLaughlin & Emma Robinson
• ‘You have served to make this area a more
caring and kinder place, this hospice is a
monument to your generosity and caring’
Bishop Daly
Building Bridges - a history of the Foyle Hospice. Dr. Keith Munro, 2005
Palliative care at the margins
What
Who
Palliative
care
Where
When
Identity
• ‘Terminal care is a facet of oncology,
concerned with the control of symptoms’
– End of life / care of dying
– Cancer arena
– Symptomatologists
Saunders C. The management of terminal malignant disease 1984. 2nd edition
Identity crisis
Specialists in palliative care seem to lack clarity and
confidence when defining precisely what they do and how
it differs from other health care.
Part of the problem lies in a field that ‘relates to a stage of a
patient’s condition, rather than to its pathology.’
Palliative medicine lacks a specific disease, bodily organ, or
life stage to call its own.
Clark D. 2002. BMJ 324;
Doyle D. Pal Med 1993; 7:253-5
‘There is nothing
more to be done’
Disease Modifying
Treatments
Time
End
Of
Life
Care
‘There is nothing
more to be done’
Disease Modifying
Treatments
Time
End
Of
Life
Care
Disease modifying treatment
Symptomatic treatment
Time
Palliative care, incl end of life
Bereavement care
Rehabilitation
Rehabilitation
A process aimed at restoring
personal autonomy in those aspects
of daily living considered most
relevant by the patient and family
Sinclair & Dickinson (1998) King’s Fund, London
Palliative Care
.. is an approach that improves the quality of life of
patients and their families facing the problems
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.
W.H.O. 2002
Palliative Care
• Provides relief from pain and other distressing
symptoms
• Affirms life, and regards dying as a normal process
• Intends neither to hasten nor postpone death
• Integrates the psychological and spiritual aspects
of patient care
• Offers a support system to help the family cope
during the patient’s illness and in their own
bereavement
W.H.O. 2002
Palliative Care
• Uses a team approach to address the needs of patients and
their families, including bereavement counselling if indicated
• Will enhance quality of life, and may also positively influence
the course of illness;
• Is applicable early in the course of illness, in conjunction with
other therapies that are intended to prolong life, such as
radiotherapy or chemotherapy, and includes those
investigations needed to better understand and manage
distressing clinical complications.
W.H.O. 2002
Palliative Interventions
•Surgery
•Radiology
•Chemotherapy / Systemic therapy
•Radiotherapy
•Anaesthetics / Interventional pain services
•Psychiatric / psychological
Interventional Radiology
•
•
•
•
•
•
•
Gastrointestinal stents
Biliary stents
Renal stents
Paracentesis
Pleural drain
Gastrostomy tube
Vascular stents / Filters
Integrated SPCS
In-patient Unit
Hospital
Spec. Palliative Care
Community
Day Care
OPD
Education / Training / Research / Resource Centre
Palliative
care
✗
 Cancer

care
Palliative
care
Cancer
care
Metastatic non-small cell lung cancer
Oncology only (n=74)
Oncology + Pal care (n=77)
Median Survival
8.9 months
11.6 months
Depression
39%
16%
Anxiety
30%
25%
Temel JS et al. NEJM. August 18th, 2010
‘…may also positively influence the course of the illness’
J.A.M.A
• One of the most important messages of this
study is demonstrating to clinicians that state of
the art cancer care and palliative care are not
mutually exclusive.
• It is not only feasible to do both, but beneficial.
Oncology / palliative care
• It is urgent that we move capacity to provide
this kind of care upstream.
• Palliative care needs to be available from the
point of diagnosis.
Dr. Diane Meier, Mt. Sinai School of
Medicine, New York.
• If this was a report on a new drug for metastatic non
small cell lung cancer, people would be cheering in
the aisles.
• But, these are difficult conversations to have with
patients still undergoing active treatment.
• Traditionally, hospice and palliative care was offered
to patients only after all other treatments had failed.
Dr. Len Lichtenfeld, deputy CMO, American Cancer Society
Oncology / Palliative care
• There are emotional and logistical impediments to
oncologists’ making better use of palliative care
services
• Many physicians may be very uncomfortable bringing
this up on the day they meet someone with a serious
illness like lung cancer
• People are doing everything possible to instill hope
• Even using the words palliative care may make
patients and families think that you have already
given up
Dr. Mark Kris, Chief of Thoracic Oncology, Memorial Sloan Kettering, NY
Hope & honesty -Finding the right line
Treating people, not pathology
Whole person care
Social
Definition
• Disease – describes a specific pathology
affecting an organ, tissue or system in the
body
• Illness – describes the subjective experience
of the disease in the unique context of an
individual’s life – past, present and anticipated
future
Birth
Death
PAST
FUTURE
Birth
Death
PAST
Illness…
•
•
•
•
Personal reality not medical reality
Experiential
Subjective / unique
Embedded in the pattern of a life
Lickiss,JN, 2008
A patient’s journey - Mesothelioma
• Prof. Kieran Sweeney
• Medical academic, Peninsula Medical School,
Exeter, UK
• Experience of ‘being a patient’
• BMJ, August 29, 2009. Vol. 339
• Died 24 December, 2009
Prof Kieran Sweeney
• Transactions have been timely and technically
impeccable.
• But, the relational aspects of care lacked strong
leadership
• At key moments, they were characterised by a
hesitation to be brave
• My greatest fear was of losing control; not being able
to say ‘this is who I am’
• In the end, one is left alone, here in the kingdom of
the sick
Birth
Death
PAST
‘I had a fairly normal life. My girlfriend and I
had just celebrated the birth of our first
child – Lucus Jay. For me, who was so antikids, having one of my own turned out to
be the best thing that could have
happened.
I couldn’t imagine my life without him now.
It is as though something had been missing
or I was searching for something and I did
not know what until he arrived.
Then, three weeks ago, my life got turned
upside down ..’
The “Blog”
Case study
• 29 year old IT specialist
• Headaches, ataxia, poor coordination
• Enhancing pontine lesion
– GBM, IV.
•
•
•
•
External beam radiotherapy / temzolamide
Radio surgery
Dexamethasone
Disease progression clinically / radiologically
A lump was found on my brain stem.
The exact place where all the nerves
meet.
Hospice Admission
•
•
•
•
•
•
•
•
Right hemiplegia & evolving left
Anarthric
Dysphagic
Diabetic (Steroid related)
Grossly altered body image
Poor sleep pattern
No physical pain
Overwhelming existential distress
Communicated by using an I -Pad
29
27
Lukas Jay, (1)
Live in a first floor flat
22
“I don’t recognise myself”
Days to death
• Day 6: Wrote a letter to his son
• Day 4: Weaker / Increasing left weakness
– Prolonged discussion re surgery
– Planned his funeral
• Day 3: More anger / sadness
– Asking re more chemotherapy
• Day 1: Actively dying
Victor Frankl
‘The meaning of life differs from man to man,
from day to day and from hour to hour.
What matters therefore, is not the meaning of life
in general but rather the specific meaning of a
person’s life at a given moment’
It’s the little things that matter
Dearest Marymount Staff (ALL staff)
We buried our lovely Mum yesterday… I never realised how hard it
would be to describe just how wonderfully you treat patients
every day. Your calm dignity as you go about preparing people
physically and emotionally for their deaths.
You clean, you wash, you fix and sort, you medicate, you relieve
pain, you comfort and you listen.
It’s the little things that matter
Most of all though, you show compassion and understanding
beyond the bounds of belief. We noticed all the little things
that you all did. Such as covering a bit of an arm or neck to
ensure that it didn’t get cold. Or, how you gave her the exact
amount of food she requested … which was sometimes none .
Or, how you sprayed perfume over her as she slept. Or, how
you closed the doors to the other patients’ rooms before you
wheeled Mum to the mortuary chapel and played music for
her overnight stay there.