Symptom Management at the End of Life
- In a survey of 310 patients with serious, life-limiting illnesses, freedom
from pain was ranked number one in importance (Steinhauser
- The SUPPORT study found that fully half of bereaved family
members thought their loved ones were in moderate to severe pain 50% of
the time in the last 72 hours of life (SUPPORT
- With good palliative care, most deaths can indeed be peaceful
and relatively free of discomfort, although symptom management remains
challenging (Lichter 1990; Ellershaw 2001).
- Of major physical symptoms, pain and dyspnea are both prevalent and distressing,
if not skillfully addressed (SUPPORT, 1995; Hall 2002; Teno 2004).
- Among actively dying cancer patients,
prevalence rates for pain range from 51% to 100% and for dyspnea, from 22% to
46% (Lichter 1990; Ventafridda 1990; Coyle 1990; Fainsinger 1991).
- Studies of non-cancer patients are limited, but suggest that such patients
may have more difficulty with dyspnea than do cancer patients. In a chart audit
of 238 deceased nursing home patients of which only 14% had cancer, 42% were
noted to have pain and 62% experienced dyspnea in the last 48 hours (Hall
- Many patients and families fear worsening
of symptoms as death approaches and may need reassurance that such is not necessarily
the case. Good medical management can usually provide reasonable palliation.
- In a study of 200 cancer patients followed by a home and inpatient hospice
program Lichter judged 91.5% of deaths to be peaceful (Lichter
and Hunt, 1990).
- Ellershaw found that 85% of 168 cancer patients had
good symptom. In separate studies, both Ellershaw and Conill found
that prevalence of pain in treated cancer patients tended to decrease over
the last few days and hours of life (Ellershaw 2001; Conill 1997).
- Conill also found
that other symptoms increased in frequency over the final 2 weeks of life -
asthenia (76.7% increasing to 81.8%), anorexia (68.2% to 80.1%), and dry
mouth (61.4% to 69.9%).
- See module on dyspnea for other details.
- The symptom showing the greatest increase in prevalence
was mental confusion (30.1% to 68.2%).
- Studies on confusional states in the
terminal phase have revealed varying prevalence rates. Overall, it appears
that as many as 85% of people experience some altered mental status or delirium
(Fainsinger, 1998; Breitbart 2000).
- In one study, delirium was reversible in only
49% of cases, despite best efforts (Lawlor
- Not all such altered states are distressing (Hallenbeck,
- However, Ellershaw found that 13.4% of patients were agitated
at 48 hours prior to death. With therapy, agitation decreased (Ellershaw
- Many dying patients display signs of retained
respiratory secretions, sometimes called the “death rattle” (Ellershaw
2001). Although this is often disturbing to family members,
it is unclear whether patients themselves find it distressing.
- Comprehensive reviews of treatment options for symptoms in the last 48 hours
are readily available (Storey, 1998; O'Neill 1997).
- Standardized clinical pathways for care of the actively dying are
just beginning to emerge (Ellershaw
2001; Ellershaw 2003). Opioids are commonly administered for pain
As in this case, with non-verbal patients, it is not always clear if observed
changes reflect suffering. Mr. Stanton's increased respiratory rate may have
been a sign of increasing dyspnea, pain, or underlying agitation. Alternatively,
it might simply have reflected a compensatory respiratory alkalosis in response
to a metabolic acidosis with no associated suffering.
Generally, opioids previously instituted should be continued in the last 48
hours. Commonly, the dose is increased by 25-50% to treat the possibility of
increased pain or dyspnea.
In non-hospital settings, identification of an alternative route of drug administration
for patients who are no longer able to use the oral route may be challenging.
In such circumstances, subcutaneous infusions, transdermal preparations, nebulizations,
and concentrated oral solutions may be useful (Cherny
1995; Herndon 2001; Chandler, 1999).
Relief of dyspnea best correlates with steady-state blood levels of opioids,
as does pain relief. Suppression of respiratory drive is strongly correlated
with rapid rises in opioid blood levels, not steady-state levels. Dyspnea
relief is not a function of respiratory drive suppression (Bruera
1990, Mazzocato 1999, Dyspnea, 1999, Jennings 2002).
There is no evidence that opioids, when reasonably and properly administered
at the end-of-life, hasten death (Campbell,
2004). While it is reasonable to treat pain or dyspnea presumptively,
the goal of such therapy should not be simply to reduce the respiratory
rate per se; it is just one of a number of possible markers of distress.
Oxygen administration may also relieve dyspnea via mechanisms other than by
raising oxygen saturation (Watanabe,
Traditionally, care for agitated delirium emphasizes attempting to clear the
sensorium. However, in the last 48 hours this is not possible for the majority
of patients (Lawlor 2000). In all cases,
the clinician should search for and treat correctable causes of agitation, such
as medication side-effects, pain, bladder distention, or other physical discomforts.
In non-verbal patients, it is not always possible to determine if physical
discomfort is causing agitation. Often palliative therapies are attempted in
an iterative fashion, to determine if agitation is reduced or not. If no such
conditions are identified, sedating agents such as benzodiazepines, neuroleptics
such as chlorpromazine, or even barbiturates may be used, following consultation
and informed consent from the patient, family member, or proxy. In most cases,
small doses of these agents suffice to relieve agitation. Seldom is there a
need for administration of high doses of sedating agents, so-called terminal
or palliative sedation, for symptoms (Morita
2002, Rousseau, 2003). There is no evidence that the use
of sedating agents at the end of life, when properly administered, hastens death
(Morita 2001). Because
families are understandably distressed at witnessing delirium in the dying
person, they may benefit from emotional support from clinicians (Morita
2004, Breitbart 2002).
Retained respiratory secretions can be treated with anticholinergic agents
such as atropine, scopolamine or glycopyrrolate, and by turning the patient
to the side (Back 2001, Wildiers
2002). In this case, atropine eye drops were given sublingually,
as is common practice in many hospices and palliative care units. Although
there is anecdotal concern that atropine may be a less desirable agent to
use because it may cause agitation, there are no good clinical trials comparing
atropine with other drugs. Deep suctioning is uncomfortable and should be