Nora McKee, MD Although 90% of patients express a wish to die at home, how many actually do so? This module discusses the role of palliative care services in our society, and the attitudes of our society to death and dying. At the completion of this module the physician will be able to: Prior
to this century, and in the early 1900s life expectancy was short. Many
women died in childbirth due to poor hygienic practices and the absence
of antibiotics, there were no vaccines to combat common childhood
infectious diseases, and people died quickly of infections or injuries.
In the absence of tools for disease treatment, for example, intensive
care units chemotherapy or mechanical ventilation, diagnosis of a
serious illness was a death sentence. In this environment medicine
focused on comfort and caring. Some religious houses offered shelter to
those with no family support, but in most cases care was provided in
the home. Copulation and birth were unmentionable in
polite society, and just as the cemetery occupied the centre of the
village next to the church, death was a central topic of conversation.
Since most people suffered their illnesses and died at home everyone
had a personal experience of death and dying, in an old home
generations of family members would have been born and died surrounded
by their extended family. The success experienced by
medicine since the middle of the last century in treating many serious
illnesses has resulted in a change of attitude. Physicians and patients
alike celebrate the fact that they need not die of random infections
and accidents, but as a corollary we have difficulty in accepting
inescapable death. Treatment of major or incurable illness is seen in
terms of a fight. Dylan Thomas grieved that his father went "silent
into that dark night" and begged that he should "Rail against the
fading of the light". We hear always of people who died "after a
year-long battle with cancer". Productivity, youth and independence are
valued, while aging and the interdependence of family in providing
caring are devalued. We focus on science, technology and mass
communication rather than the art of caring and communicating as
individuals. Some even speak of a "death-free generation" i.e. one that
is born, lives through infancy, childhood and adolescence, enters into
adulthood, marries and has children all without experiencing the death
of a significant, close family member. Now
in the early twenty-first century copulation is almost public property,
birth is openly discussed and often witnessed, and public knowledge of
violent death through wars, motor vehicle accidents, concentration
camps and the fantasies offered through mass entertainment has
increased in an unparalleled way. Yet the topic of individual death and
dying has become the "unmentionable". Science has solved many puzzles
of medicine, for example the code of the human genome, but death still
remains a mystery. Perhaps medicine, like the rest of society, prefers
to avoid or ignore this particular puzzle. Physicians can
often be involved in the cure of previously incurable disease, but
along the way medicine can and often still does prolong living with
difficult symptoms and increased suffering. Few people now die suddenly
and quickly. Most experience a long period of decline or live with
chronic illnesses and periodic crises. Although physicians must focus
on the optimal survival of the patient, this often leads to the belief
that death is always the "enemy" in the "battle". The
demographics of present day society show that most people live alone or
as couples, family members are separated by geography, and by their own
interests in "living their own lives". Family members living in close
proximity are often frail, elderly or ill themselves and unable to
share in care giving. The role of care giver usually falls to a woman
who may be fully occupied with her own family, may have no specific
experience or skill in caring for the ill and dying, and who may lack
even the basic resources to care for a family member in her home or
theirs. Financial pressures can be significant; in the United States a
diagnosis of cancer may mean family bankruptcy. Although 90% of people
state that they want to die at home in effect only 20% do. 57% die in
hospital, 17% in nursing homes, and 6% elsewhere. Palliative
care is not new. It is as old as medicine itself. It is not care
offered by a trained and selected few, but is provided by all
caregivers. It emerged as a specialty in England 25-years ago as a
response to the realization that the needs of the dying and their
families were not being met, and it has been evolving ever since. The
World Health Organization definition of palliative care is: The
public expects good "end of life" care. Physicians recognize, at least
at an intellectual level, that all of our patients will die, and all
specialties deal with death or with serious life-altering illness in
some way. Regrettably those who dispense that care often have no formal
training. In the United States only four of 126 medical schools
reported a separate, palliative care course in their curricula. Issues that can become part and parcel of discussion of palliative care are: Very
ill patients may make requests of their physician to consider these
options. While the requests may be the rational result of long
consideration and planning, the physician must always remember that
they will more often be made due to: The
principles of palliative care are directed to meet these underlying,
and often unexpressed, concerns. Palliative care attempts to address
the physical, psychological, social and spiritual needs of the patient
and family. In palliative care the family is the unit of care and that
care is provided by an interdisciplinary team, which embraces all
levels of service providers with programs coordinated to facilitate the
continuum of care. Workers in palliative care advocate a
quality of life as defined by the patient, with equal and timely access
to services based on prioritized need. As well as support for the
family in the lifetime of the patient, bereavement follow-up is
offered. Team members involved in offering palliative care services
include nurses, physicians, social workers, pharmacists, volunteers,
clergy, members of the Home Care team, ethicists, students,
physiotherapists, nutritionists, and massage and ostomy therapists. Palliative
care has tended to develop autonomously in several areas of the
province, as an example, this is the developmental timeline in
Saskatoon. The Provincial Government has also become a part of overall palliative care services providing: Although
pain is not the predominant symptom in terminal states (loss of
strength, feebleness and weakness are described more often), the World
Health Organization estimates that 80% of the 5 million people who die
from cancer annually die with uncontrolled pain. Since 70% of patients
with advanced cancer have pain, that suggests that physicians
approaches to pain management in palliative care is far from ideal. In
local practice, many effective analgesics are freely available and
failure to adequately control pain is often due to physicians lack of
knowledge about pain, especially its assessment and treatment, and also
to adherence to the "disease centred" model of care in which physicians
are accustomed to working, rather than the "symptom centred" model or
care which is the principle of palliation. In addition, there are
biases and fear on the part of physicians, patients and families toward
the use of opioid analgesia. For physicians much of the
discomfort around treating pain in the palliative care situation is fed
by discomfort in communicating bad news, i.e. although symptoms can be
treated there is no longer an effective curative treatment.
Many physicians lack skills in negotiating goals of care with the
patient, and are not sure of their skills in meeting the patients
needs, partly due to the lack of appropriate clinical role models in
training and in continuing professional development and partly due to
the lack of consultation services in many areas. Patients
and families express concerns about side effects of confusion,
constipation and sedation, and many physicians are uncomfortable in
discussion of managing these effects. Unreasonable concerns about
addiction have also been issues, as has the belief that pain is an
inevitable complication of cancer, and that the use of opioids in the
early stages of disease does not allow for pain control later on, and
in fact represents the "end of the road". Pain in any
situation is an unpleasant sensory and emotional experience, but in the
context of a terminal disease the experience of pain is related not
only to somatic factors but also to many powerful psychological and
subjective factors. The components of "Total Pain" are: The role of members of the
palliative care team is not only to treat the patients symptoms, it is
also to support family members as death approaches. To this end
caregivers need to know what changes to expect towards the end of life.
There are no absolute prognostic signs (see article on Communicating
Prognosis), but some signs alert the team to prepare for the death of
the patient. These
symptoms will gradually progress to the moment of death, which may be
difficult to pinpoint in real time. In many cases physicians are not
called upon to pronounce death until it is very obvious, but in the
situations where the physician is involved at the time of death these
steps should be taken: At
the time of death the members of the palliative care team need to
complete the care that has been provided by dealing with many of the
legal and practical issues that surround death in our society. It is
sometimes necessary to arrange a time and place where members of the
family can be informed of the details of the death and occasionally to
agree to an autopsy. Although other health care workers can and do
pronounce death the registration of the death, must be made by a
physician by completing the death certificate. The care
of the patient and family through dying and death is a complex issue in
palliative care, involving symptom management, emotional and practical
support, and a thorough knowledge of the services available for the
dying patient. They do not only provide support to their patients but
can receive support themselves by being involved with a palliative care
team approach. The Case of Mrs. A.J. Mrs.
A.J. was an 84-year old woman hospitalized with respiratory failure
related to pulmonary fibrosis of unknown cause. On admission she was
very weak and was essentially bed bound. She ate very little even with
coaxing and even when her favorite foods were brought from home. Her
family visited frequently but they were quite, seemed angry and did not
ask many questions about her care. A discussion was held
with her family on admission and they requested all aggressive therapy
be given. Since a specific cause for her respiratory difficulties had
never been found, they were still hopeful for a cure. IV fluids were
given throughout her stay but her veins were fragile and the line
needed to be restarted frequently. She was also diabetic and required
frequent glucose monitoring and then small doses of insulin were given
by sliding scale. Her sodium was noted to be low so fluid and
electrolyte changes were initiated frequently. Some days she had
phlebotomy draw blood three times per day. Because of her
poor caloric intake, Nutrition Services were consulted and they
suggested she have either a nasogastric tube feed or TPN (total
parenteral nutrition). To provide the TPN, insertion of a central line
was attempted but was difficult so an NG tube was used for enteral
feeding. Mrs. A.J. began to have confusion at night and
would pull at her tubes so at times her arms were restrained. She began
asking the nurses to stop given her so many needle pokes. Since her
breathing was labored, a junior resident had questioned if she could
have sedatives or perhaps something for discomfort, but it was felt the
medications may suppress her respiratory drive. As her
condition worsened she required transfer to ICU and ventilation. The
tube feeds had to be discontinued because she developed an aspiratrion
pneumonia and then needed antibiotics. The ICU team tried to enter in
to discussions with the family about ceasing treatment but they were
resistant and still seemed angry. Mrs. A.J. stopped
breathing suddenly during the night with no family members present. CPR
was performed for ten minutes with no response. The family never hears
from the caregivers in follow up and they remain angry but the reasons
remain unknown. What could have made a "better" death for
Mrs. A.J.? What principles of palliative care could have been used to
improve her situation? The Case of Mrs. L.M. Mrs.
L.M. was a 46-year old woman admitted to Royal University Hospital
under gynecology oncology from a rural Saskatchewan hospital where she
had been visiting family. Five years preceding this she had had a
hysterectomy for menorrhagia. The pathology specimen revealed cervical
cancer despite the fact her PAP smear had always been normal. She had a
metastatic recurrence two years ago on the left pelvic wall. She had
surgery at that time and a radiotherapy implant done in Edmonton. She
had been admitted to the rural hospital with pain and naseau and
referred in for a CT scan and possible chemotherapy. She was married
and living in Saskatoon with her four children, a daughter and three
sons (whom had all been diagnosed with ADD). On admission
her medications included: MS Contin 30 mg po bid, Gravel 25 to 50 mg IV
q4h prn, (used five times in the past 24-hours), Colace 100 mg po prn,
Morphine IR 10 mg po q2H prn (used ten times in the past 24-hours),
Lorazepam 1 mg po at hs prn. On initial assessment she
rated her pain 8/10 and 10/1 with movement. The pain was in her pelvis
and left hip, aching and constant with occasional exacerbation. There
was no radiation of pain into her leg. She was having nausea, which was
controlled by the use of Gravol, but she had to use it frequently. She
had had a bowel movement two days previous. On exam she looked well
hydrated and was clear minded during history taking. When
suggestions in regards to symptom management was made, Mrs. L.M. sated
she did not want to use more Morphine because the rural doctor had told
her that if she used more she would become addicted. Her parents also
stated they didn't want her to take any of the MS Contin because they
felt it was making her too drowsy. She actually was very resistant to
seeing the Palliative Care Team because she still wanted active
treatment. The Team listened to her concerns and those of
her family. In a family meeting the philosophy of palliative care was
discussed and it was explained that both treatment of disease and
treatment of symptoms can occur simultaneously. Since she was
tolerating Morphine well with few side effects it was decided to
continue MS Contin. The physician involved felt her drowsiness may have
been more a factor related to the frequent doses of Morphine IR and
heavy use of Gravol. The difference between tolerance and addiction
were discussed. Since her total dose of Morphine used in 24-hours was
160 mg, MS Contin 75 mg po bid was initiated. The breakthrough dose of
Morphine IR was increased to 16 to 24 mg po q1h prn (the breakthrough
dose should be 10 to 20% of the total regular daily dose). Maxeran 10
mg po qid regularly was started to treat nausea so the Gravol could be
decreased. The Cancer Centre saw Mrs. L.M. and chemotherapy was
initiated because evidence was found of metastatic disease. On
discharge the MS Contin dose was 90 mg po bid. She still suffered from
a level of sedation but she rated her pain at 2-3/10. Ritalin can be
used for the sedation of opioids but she refused. Her sons had been
treated in the past with Ritalin and she had some preconceived biases.
She was willing to have the Palliative Home Care nurses follow her at
home for symptom management now that she understood the service. Six
months later Mrs. L.M. was admitted to St. Paul's Hospital. She was
admitted primarily for symptom management but there were no beds in the
Palliative Care Unit so she was given a bed in the orthopedic ward.
Recently she had developed a new pain radiating down her left leg. It
was described as sharp, electric in nature and burning. The Cancer
Centre had recently done a bone scan, which reported lytic lesions in
the iliac crest and pelvic rami, as well as suspicious areas in the
lumbar spine. She had been told two weeks previous that there was no
further chemotherapy available and her disease was advancing. She was
on the waiting list to have radiotherapy to her pelvis. Forty-eight
hours before admission she was noted to have confused speed. She was
picking up objects in the air and seeing people in her room that were
not present. She had also been vomiting and had had no bowel movement
in six days. Her family reported she was eating very little. She had a
very dry oral mucosa and was having problems swallowing oral meds. On
admission her medications included: MS Contin 200 mg po tid, Dilaudid
Contin 9 mg po bid (added in the last two days) Morphine IR 20 mg po
q1h prn for breakthrough (six doses used in the last 24-hours), Maxeran
10 mg po qid. Initial admission blood work revealed she was in acute
renal failure with a creatinine of 312. A renal ultrasound showed a L
hydronephrosis and urology was consulted. The palliative
care team felt Mrs. L.M. was suffering from delirium and felt the cause
should be investigated. Her serum calcium was normal. Doing a CT scan
to look for brain metastasis was considered. Once it was determined she
was in renal failure it was decided to rotate narcotics and avoid
Morphine. The metabolites of Morphine can rapidly accumulate in renal
failure and are a common cause of delirium. She was hydrated with a sc
infusion of fluids because IV access was difficult. Fluids can be given
by this route at a maximum of 30 to 40 mls/hour. Urology placed a
percutaneous stent, which led to rapid resolution of her obstructive
uropahy. It was felt the obstruction was related to her extensive
pelvic mets, so radiation oncology was consulted on an urgent basis. Her
family doctor had added oral Dilaudid before admission in an attempt to
address her escalating pain needs. Having two narcotics used
simultaneously can be confusing in the case of delirium, because it is
hard to determine which is the causative agent. In this case it was
felt to be the Morphone so Dilaudid was initiated as a sc infusion and
iterated up to control pain. Because her pain was not neuropathic in
nature and adjunct was added, Elavil 10 mg po at hs. NSAIDS can be
useful in bony pain but must be used with caution in renal failure. Once
the dose of narcotic required was determined, Mrs. L.M. was rotated to
a Fentanyl patch in an equianalgisic dose. This was chosen because her
nausea persisted and the use of the oral route was unpredictable. Her
mentation returned to normal quite rapidly and radiotherapy was
initiated. She was able to be discharged home with Palliative Home Care
with a plan to re-admit to the Palliative Care Unit if care at home
became to difficult. A volunteer from the PCU was matched with the
family to follow them and give support at home. Mrs.
L.M.'s last admission was initiated from home because she was
unresponsive. There was a bed available in the PUC the day her family
requested assistance. She had steadily been deteriorating over a
two-week period. Her family was very distraught, especially her
daughter as she had been acting as caregiver for her mother and for the
younger children. On initial assessment she was noted to
have rattling respirations when lying on her left side. She had periods
of restlessness and moaning. She had not eaten for two days and her
parents were requesting some form of feeding be initiated. Her family
agreed with a Do Not Resuscitate order but they were not sure that is
what Mrs. L.M. would have wanted, as they had not discussed the issue
with her. The Fentanyl patch was continued for pain and
Dilaudid was given PRN for the restless periods. A Scopolamine patch
was applied to ease the death rattle. Versed was given sc for terminal
restlessness. A family meeting was held to discuss end of life issues.
It was discussed that feeding methods at the end of life often led to
more discomfort than benefit. Her family requested fluids be given and
a sc infusion was initiated at a low rate so as not to worsen her
rattling respirations. The futility of resuscitative efforts at the end
of life was also discussed. In the last 24-hours of life
she seemed in pain and required an infusion of Dilaudid and frequent
doses of Versed. Mrs. L.M. died one week after admission. The family
was followed up by the bereavement volunteer program and counseling
from the PCU social worker whom works specially with children. What was better about this case? What principles of Palliative Care were in evident?
Assistant Professor
Department of Academic Family Medicine
University of Saskatchewan
Which medication side effects are important in palliative care?
What personal issues affect a physician's approach to palliative care?Life and Death in Past Societies
Death in Modern Society
Palliative Care
"The active, total care of patients whose
disease is no longer responding to curative treatment. Control of pain,
of other symptoms, and of psychological, social and spiritual problems
is paramount. The goal of palliative care is achievement of the best
quality of life for patients and their families. Many aspects of
palliative care are also applicable earlier in the course of the
illness in conjunction with aggressive medical treatment."
"People's
medical training acts as a filter through which too often they can see
only curative or life-prolonging options. When I explain end-of-life
care to church groups or service groups, such as Kiwanis or the Rotary,
or to undergraduate students, they tend to get the idea immediately. It
is not that they know more, but rather that they have to unlearn so
much less."
From "Dying Well" by Ira Byock
1980
Humanitas, Inc. formed
1983
Palliative Home Care Project
1985
St.Paul's Hospital Palliative Care Consultation Team
1990
12 bed regional Palliative Care Unit St Paul's Hospital
1990
Palliative Care Consultation Teams and City Hospital and Royal University Hospital
2003
Re-organization
of Palliative Care and Home Care within Saskatoon Health Region with
four beds available in long term care facilities.
Pain in Palliative Care Situations
Pain is what the patient says it is, not what others think it should be.
Signs of impending death
Cases for Death, Dying and Palliative Care
