When to Refer Patients to Palliative Care: Triggers, Traps and Timely Referrals

When to Refer Patients to
Palliative Care:
Triggers, Traps and Timely
Christina Melvin, MS, PHCNS, BC
Clinical Assistant Professor
They said there was “nothing to do” for this young
man who was end stage”. He was restless and
short of breath; he couldn’t talk and looked
terrified. I didn’t know what to do, so I patted
him on the shoulder, said something inane, and
left. At 7 am, he died. The memory haunts me. I
failed to care for him properly because I was
ignorant” (first year intern) (Ferrell & Coyle, 2006,
p. 5).
Elizabeth Kubler-Ross
Dame Cecily Saunders
• Identified that the needs of dying people are
• Dying people require specialized care.
Development of Hospice
• Dame Cicely Saunders’ (1967) work is described
as follows:
▫ “ Her concept of hospice was to combine the most
modern medical techniques in terminal care with
the spiritual commitment of medieval religious
orders that had once created hospices as way
stations for people on pilgrimages” (Beresford, L.
Total Pain
Spiritual (existential pain)
Hospice Care
• Multidisciplinary approach
Social Worker
Home Health Aid
Bereavement Coordinator
Phenomenological Research Study
• Conducted in Perth, Western Australia
• January- June 2008
• Examined:
▫ barriers to timely referrals to palliative/hospice
care and
▫ the effects of late and non-referral on quality of
life for patient and family
Palliative Care
• “Palliative care is an approach to care which
improves quality of life of patients and their
families facing life-threatening illness, through
prevention, assessment and treatment of pain
and other physical, psychological and spiritual
problems” (World Health Organization, 1982).
• Time frame- approximately 12 months prior to
anticipated death.
Aim of Palliative Care
• “is to relieve suffering and improve quality of life
for patients with advanced illnesses and their
families through specific knowledge and skills
including communication with patients and
family members; management of pain and other
symptoms; psychological, spiritual, and
bereavement support; and coordination of an
array of medical and social services” (Field &
Cassell, 1997, p.4).
Hospice Care
• Comfort care with focus of treating all symptoms
but without curative intent.
• Time frame- approximately six (6) months prior
to anticipated death.
• Provides “support and care for persons in the
last phases of incurable disease so that they may
live as fully and comfortably as possible. Hospice
recognizes dying as a normal process of living
and focuses on enhancing the quality of
remaining life” (Ferrell & Coyle, 2006, p.7).
Research Questions
1. What are the barriers to timely referral to
palliative care services in Western Australia?
2. What effects do late referrals have on quality of
life of palliative care patients and their families
in Western Australia?
Phenomenological Research
• Is both a philosophy and a research method that
explores and describes everyday experiences in
order to generate and enhance an understanding
of what the experience is like” (Fain, 2009, p. 203).
Participants: Group 1
▫ 11 health care professionals were interviewed.
Three (3) palliative care specialists
One (1) medical oncologist
Five (5) nurses
One (1) coordinator of Quality Improvement and
Risk Management
 One (1) Chief Executive Officer of a home health
palliative care service
Participants: Group II
▫ Thirteen (13) patients (one withdrew from study)
▫ Six (6) family members
 Three (3) wives
 One (1) sister
 Two (2) daughters
Overarching Theme
• Lack of Knowledge among both groups studied.
Lack of Knowledge
• Palliative Care Physicians
▫ General Practitioners do not refer patients in a
timely manner.
▫ Referrals either come late in the disease process or
not at all.
▫ Findings reflect:
 lack of knowledge by GP’s about benefits of
palliative care, and
 when in the disease process it is most advantageous
to refer.
Other Barriers to Timely Referrals by
• Fear of losing control of the patient;
• Fear of being a failure to patient if no further
life-sustaining treatments are available; and
Patients with Motor Neuron Disease
• ALS, MD, MS, etc.
• Respiratory support- major challenge
• Quote
Fear of Losing Control
• Often referrals from oncologists, hematologists,
and neurologists either do not come at all or
occur very late in disease process.
• Referrals come so late that it is difficult to
address complex needs.
• Shift in paradigm in palliative care.
Feeling of Failure
• Medical Schools: Cure, cure, cure
• Transition from “cure” to “comfort” caredifficult for health care providers
Feeling of Failure
Traditional medical model is “…steeped in
curative measures intended to heal… The most
advanced medical technologies and diagnostic
tools are used to diagnose and cure physical
illness. Patients are encouraged to pursue
aggressive, expensive, and often agonizing
medical treatments in an effort to sustain life at
all costs.” (Bicknell-Swenson, 2007, p.229).
Impact of Late Referral to Hospice and
Palliative Care
“The real tragedy of late referral is that they
(patients) have to go from that point (treatment)
to accepting they are dying within days
sometimes, and that is very hard for them to do
emotionally and psychologically. They have to
wrap their head around 2 days ago they were
having chemo, and now we are telling them that
they are going to die within the next few days.”
“They don’t get the opportunity to sort through
and grieve themselves. They have to do all that
in a hurry sometimes. Sometimes we may have
two or three meetings in the same day just to
start the process and then advance the bad news
and then finally talk about dying later in the day.
That is something we would rather do over a
number of weeks.” (Palliative Care Specialist)
Group II: Patients and Families
• Overarching theme- Lack of Knowledge
• Either had no knowledge of palliative care or
• Thought that palliative care occurred in final 4872 hours of life.
Patient Thought
“I was terrified when my doctor gave me a
pamphlet with available services. I thought that
palliative care was for the last week or so. I
thought well I’m not ready for this; maybe in a
year or two. I found out from a friend of a friend
that palliative care specialists treat all sorts of
symptoms. Dr. X has been fabulous. I think that
it would be an excellent idea to have palliative
care introduced early on.” (‘Angela’-patient with
advanced breast cancer)
Family Member Thoughts
“The issue for Sam, even though he was terminally ill
from the day of his diagnosis has been pain issues.
So every time we called the community palliative
care service, it was to do with him being in so much
pain we couldn’t manage it at home. So um… Even
though they (home care palliative service) were
brilliant, they couldn’t manage his pain either. So
eventually they suggested that we send him into the
palliative care unit (inpatient) even though his
passing wasn’t imminent” (‘Gina’ -wife of 52 year old
Family Member
“I just assumed that palliative care was where you
went the last week or whatever. I didn’t realize
that you could come and go. I was completely
ignorant” (‘Gina’ continues).
Family Member
“All I know is that when we found them, they were
a lifesaver. That is all I can say. Sam, being a
young man, we were ignorant to any services
really. I had this blurred vision that they came in
and gave the showers and did all of that sort of
thing. I mean it was just…. We stumbled on it
through the chemo nurse, really. And seriously,
they were the best thing that ever happened to
us” (‘Gina’ continues).
Family Member
“Yeah, definitely because there are a whole lot of
things that splinter off him being ill and I just
feel that they (palliative care team) have
understood that and sort of supported us in
unseen ways. I just think that they (palliative
care team) go to a deeper level. They really know
where we are at. That for me has been fabulous”
(‘Gina’ continues).
Family Member
“We needed it earlier (palliative care). We could
have used Dr. X sooner. Do you know that he
gave us his mobile number? I think that
information about palliative care should be given
shortly after diagnosis. Dr. X told us that there
were lots of combinations of pain medication
and she should not be in pain. There are lots of
things that palliative care can offer-not just at
the end of someone’s life” (‘Angela’s sister).
Family Member
“He is a very complex man. He was never easy to
deal with. In fact, we have been married for 49
years and the first time that he told me that he
loved me was two days ago. He has also told the
children that he loves them… Since we have been
here (inpatient palliative care unit), we have
done a lot of work so it will make his passing
easier” (‘Beth’-wife).
Timely Palliative Care Referrals
• Referrals that are made early on avoid the risk of
referral when the patient is in crisis; which in
turn allows healthcare providers to better meet
complex needs (Bennett, 1994; Miller et al, 2003).
Timely Palliative Care Referrals
• Overly optimistic prognoses are more likely to
cause patient to die in hospital on mechanical
• Patients who receive more realistic estimates of
their survival potential are more likely to utilize
hospice and palliative care services, and
• Often are able to chose where they prefer to die
(Weeks, et al. 1998).
Timely Palliative Care Referrals
• Late referrals contribute to caregiver burden
• In the case of the woman with advanced breast
cancer, her husband died suddenly leaving her
sister as the primary caregiver.
• Angela’s sister- dealing with tremendous grief
coupled with increased care needs of patient.
Timely Palliative Care Referrals
• “Late referral, crisis referral and in some
instances non-referral of patients to specialized
palliative care services can impact significantly
on the quality of life of patients and their carers”
(Weeks et al., 1998, p.23).
• Impact of late referral is clear.
• Average time Australians spend much longer on
palliative care (3-6 months)
• Average time Americans spend in hospice- 21
• Study demonstrates that late referrals to
palliative/hospice care negatively affects patient
and family, and
• Negatively affects quality of life.
• Lack of Knowledge-overarching theme
• Physicians are hesitant to refer
• Patients and families- misinformed or totally
unaware of palliative care services
Strategies for Change
• Improved general public education
• Improved education regarding end of life issues
in medical and nursing schools
• Continuing education for practicing health care
• Improved funding for end of life care
• Role of the Advanced Practice Registered Nurse
in end of life care
“Why are you afraid? I am the one who is
dying!...But please believe me, if you care, you
can’t go wrong. Just admit that you care. That is
really all that we are searching for. We may ask
for why’s or wherefore’s, but we don’t really
expect answers. Don’t run away-wait-all I want
to know is that there will be someone to hold my
hand when I need it. Death may get to be routine
to you, but it is new to me” (Nursing Student, 1970,
p. 336).
• Anonymous. (1970). Death in the first person. American
Journal of Nursing,70(2),336.
• Bennett, M. & Corcoran, G. (1994). The impact on community
palliative care services of a hospital palliative care team.
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• Beresford, L. (1993). The Hospice Handbook: A Complete
Guide. Boston: Little, Brown.
• Bicknell-Swenson, D. (2007). End of life training in US
medical schools: A systematic literature review. Journal of
Palliative Medicine, 10(1),229-235.
• Fain, J. (2009). Reading, Understanding, and Applying
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• Kubler-Ross, E. (1969). On Death and Dying. New York, NY:
Macmillan Publishing.
• Field, M.J. & Cassell, C.K. (1997). Approaching Death:
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Academies Press.
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