Communication Encouraging Optimal Care at Life For Hospitalized Patients

A communication model for encouraging optimal care at the end of life for hospitalized patients -- Workman 100 (12):
791 -- QJM
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QJM 2007 100(12):791-797; doi:10.1093/qjmed/hcm114
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A communication model for encouraging optimal care at the
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A communication model for encouraging optimal care at the end of life for hospitalized patients -- Workman 100 (12): 791 -- QJM
end of life for hospitalized patients This Article

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Summary
Top
Multiple studies have demonstrated that treatment at or near the end
Summary
of life is rarely optimal. Unwanted death-prolonging treatments are Introduction
frequently provided and open communication about death and Step 1. Obtain informed...
dying is often lacking. Early effective communication about goals, Step 2. When a...
prognosis and options would improve patient care at or near the end Step 3. When life-sustaining...
of life by enhancing choice and facilitating palliative care. A five- Step 4. Stopping death...
step sequential approach to communicating with patients at risk of Step 5. Requests for...
dying in hospital about treatment goals and outcomes (and/or their Potential benefits and...
family members) is presented. The five steps are founded upon the References
recognition that trials of life-sustaining treatments are also, by
definition, trials of palliative care. A narrative review of currently available qualitative and quantitative

research is used to support the recommendations.
Introduction
Top
Many people die in hospital1,2 often after a trial of life-sustaining
Summary
treatments, including admission to intensive care,1,3 has failed. Introduction
Such ‘aggressive’ treatment is often provided before prognosis and Step 1. Obtain informed...
goals of care are determined even when the diagnosis is of an Step 2. When a...
4,5
incurable malignancy, or a progressive and fatal disease such as Step 3. When life-sustaining...
6
congestive heart failure. Once initiated, trials of life-sustaining Step 4. Stopping death...
treatments can last days or weeks. 1,3,7 The inability of physicians to Step 5. Requests for...
8,9
exactly predict the time of death and a tendency to overestimate Potential benefits and...
survival10 complicate decision making and promote overtreatment. References
One study demonstrated that on average the switch to comfort care
occurred two weeks after admission and two days before death.11 Inadequate symptom control before
death is also commonly described.12 Despite increasing public and professional awareness of these
problems, the intensity, if not frequency of inpatient treatment before death in hospital is increasing in
the United States.13
Communication and decision making can be difficult during trials of treatment because illness frequently
causes patients to lose decisional capacity.14,15 As well some patients will prefer not to discuss their
prognosis.16–18 Living wills and advance care plans, while useful, are frequently not available19 or
desired20 and do not obviate the need for communication. Consequently, physicians must very
frequently help patients or their family members make ‘the transition from gravely ill and fighting death
to terminally ill and seeking peace ...’.21 Damaging conflict22 can occur if this transition is abrupt.23
A network of medical ethicists in Canada's largest urban center recently identified conflict over
treatment decisions at the end of life as the most important ethical challenge facing society.24 In the
United Kingdom, dissatisfaction with care at then end of life causes half of all complaints to the National
Health Service. ‘In many cases, families complained that they had received contradictory or confusing
information from different staff caring for a relative. In other cases, relatives felt that they were
unprepared for the death or had no time to arrange for family members to be present.’25
Optimal care near the end of life requires effective communication. Although ‘end of life conversations
need to become a routine structured intervention ...’26 they are not. Nor are trials of communication
strategies available. However current research can and should27 inform the communication process. In
order to integrate current knowledge into practice, and as a stimulus to research and introspective

practice, a five-step approach to communicating with patients and family members of seriously ill
patients during a trial of life-sustaining treatments is proposed. A schematic outline of this approach is
provided (Figure 1). For each step a structured dialog is presented in italics.
Figure 1. Communicating with family members about initiating

continuing or limiting life-sustaining treatment.
View larger version (22K):

[in this window]
[in a new window]
[Download PowerPoint slide]
Step 1. Obtain informed consent for a trial of life-sustaining

treatment
Top
Physicians need to consciously consider28 and communicate that
Summary
death is a possible or probable treatment outcome. When treatment Introduction
is burdensome and potentially ineffective, patients should be Step 1. Obtain informed...
offered the option of palliative care. Many are not.29–31 (Critical Step 2. When a...
care nurses feel this failure is an important cause of over-treatment Step 3. When life-sustaining...
at the end of life.32) Failure to determine prognosis contributes to Step 4. Stopping death...
patients suffering unnecessary pain33 and receiving more treatments Step 5. Requests for...
than they would have otherwise preferred.28,34–36 Potential benefits and...
References
Whenever possible, patients need to participate in decision making
as the ability of proxy decision makers to predict patient preferences is limited. Most patients will wish

to participate,16,37 and many seriously ill patients believe that an open and honest relationship with their
doctor was the single most important element of their care.38 Family members also prefer to know when
death is a possible or certain outcome of treatment.38–41 Both treatment burden and likelihood of success
should be established.42 Patients do not want physicians to defer advance care planning until the disease
is very advanced43 and progressive illnesses may prevent patients from participating in future decision
making.14
Acknowledging that treatment may fail can strengthen the relationship between family members and
patients and health care providers,4,44 increase the emphasis on palliative and symptomatic treatment,4,45
and help create realistic expectations. Physicians should allow hope,46 but encourage realistic
acceptance.
Discussions about prognosis are a good starting point as they frequently evolve to a discussion of
treatment options.47 The extent to which treatment can help, and the expectations placed upon that
treatment need be established.48,49 Family members or patients may identify circumstances under which
treatment would not be wanted.50 Physicians must routinely address the emotional needs of both patients
and family members. Carefully listening can be very beneficial to family members.51
‘Your father is very sick. Even with the very best treatment he might not survive. The only way to know if
treatment will save his life is to try. At this time treatment would include ... While treating him we would
also ensure that he remains as comfortable as possible. We could also provide purely comfort care if this
is what you believe he would want, although this means he would (probably) die. Have you ever talked
about these kinds of things with your father? How do you feel about what I have told you? Do you know
what kind of treatment he would want? ... Do you know if there are any reasons he would want us to stop
these treatments?’
Step 2. When a patient's prognosis worsens

Top
When prognosis worsens, the goals of care should be reassessed.
Summary
This can allow families and patients time to come to terms with the Introduction
possibility of treatment failure. A stated willingness to continue to Step 1. Obtain informed...
provide ‘aggressive’ treatments at this point helps demonstrate that Step 2. When a...
everything possible is being done. At this point decisional authority Step 3. When life-sustaining...
clearly resides with patient and his or her family, however treatment Step 4. Stopping death...
recommendations and advice are appropriate.38,52,53 Step 5. Requests for...
Potential benefits and...
‘There is a small chance that treatment could allow you to survive. References

The chance of survival is getting smaller but it still remains at this time. I need your help to make sure
that we give you treatments you would want to receive. Some patients would want treatment continued.
Others would not. Do you know what you would like to do? .... If you are uncertain my advice at this
time is to continue for another few days and then reassess....’
Step 3. When life-sustaining treatment fail

Top
Should ‘...[it become] apparent that further intervention will only
Summary
prolong the final stages of the dying process’54 patients and family Introduction
members should be told as much.55 Consistent prognostic Step 1. Obtain informed...
information is strongly desired56 so medical teams and consultation Step 2. When a...
services must obtain prognostic consensus whenever possible.57 Step 3. When life-sustaining...
Step 4. Stopping death...
Concluding23 and communicating58–60 that life-sustaining Step 5. Requests for...
treatments have failed are difficult tasks and sometimes avoided.59 Potential benefits and...
Assistance in communicating bad news, developed as part of the References
EPEC project, ® (Educating physicians in end of life care) is
available on the internet61 along with other sources.62 ‘Wishing’ that one could give better news is very
likely true and worth stating.63
A shared understanding that treatment can only prolong the dying process must be established.57,64
Physicians trusted by the patients’ families may be of help in promoting acceptance.56 Other medical
opinions, bioethics consultations23 and consulting clinicians experienced in end of life care45 can also
facilitate acceptance. Clergy are very important to some families.39,65 Hope is mutable and has a
spiritual as well as probabilistic dimension65 so physicians should never say that there is ‘no hope’.
Instead they can acknowledge that medical treatments, in contrast to religious beliefs, can no longer
sustain hope.
‘Can you explain to me what you have been told about your husband's condition? I wish I had something
else I could tell you, but our efforts have not worked. I wish our treatments could save his life, but they
have not worked as we had hoped. Am I certain he is going to die? I cannot see anyway that our
treatments could stop him from dying. I understand that you hope for a miraculous cure, but our
treatments cannot make this occur.’
Step 4. Stopping death-prolonging treatments

Top
The majority of patients do not want the final stages of the dying
Summary
process prolonged,66 However, ‘If the clinician encourages decision Introduction
making about treatment withdrawal too soon without Step 1. Obtain informed...
acknowledging the enormous emotional impact of the loss and Step 2. When a...
without first understanding their [patients’ or family members’] Step 3. When life-sustaining...
view of the patient's clinical situation, conflict often ensues’.52 Step 4. Stopping death...
Step 5. Requests for...
The role patients or family members will play in the decision- Potential benefits and...
making process must be considered.67,68 For example, asking References
family members of incompetent patients to determine the
appropriateness of treatment69 seeks informed consent. The consent process, by definition gives
decisional authority away and strongly implies that the option to continue treatments remains equally
available.
At this point the treatments will only prolong the dying process. Do you know if he would want us to
withdraw treatment at this point? [or not?] At this point I would recommend that we withdraw
treatments over the next several days while ensuring that he experiences no discomfort or distress [but
treatment will be continued if you prefer.]
If a willingness to continue treatments does not exist, a care plan that includes comfort measures and
withdrawal of death-prolonging treatments can be presented. (Family members can still ask or demand
that treatment be continued however.) A clear treatment recommendation may be appreciated.67 Health
care personnel frequently approach decisions to limit treatment from different perspectives.70 They
should reach agreement on a recommended care plan before talking to family members.
I wish I could give you some other news. I know how you have feared this possibility. We have done
everything possible to allow your daughter to survive. All I can do at this point is to allow her to die with
as much comfort and dignity as possible and to help you deal with this terrible loss. We know patients do
not want the dying process to be prolonged at this point, so if it is alright I would like to talk with you
about what will happen next. Do you feel ready to do so? When patients are dying we withdraw
treatments not necessary for comfort over a period of time .... How do you feel about what I have told
you? ...
Step 5. Requests for continued treatment

Some family members of unconscious and dying patients will want death-prolonging treatments
continued. Respect for the sanctity of life demands that their reasoning be carefully and sensitively

explored.71 Simply declaring that treatment is ‘futile’ forecloses Top

further communication and is likely to be counterproductive.72 Summary
Introduction
Family members should be helped to articulate their hopes and fears Step 1. Obtain informed...
and reasons for wanting continued treatment. Active listening, Step 2. When a...
negotiation and compromise are all required.51,73,74 Ensuring Step 3. When life-sustaining...
patient comfort, minimizing conflict and distress, and taking efforts Step 4. Stopping death...
to maintain a working relationship with family members are Step 5. Requests for...
important ongoing goals.22 Potential benefits and...
References
Disagreements about whether a patient's quality of life justifies
continuing treatment,75 as can occur for patients in a persistent vegetative state, can require policy
guidance, third-party mediation, ethics consultations76,77 and external medical opinions.54,78 Conceding
decisional authority to family members or patients will remove conflict but will not improve a poor
relationship with health care providers.43
‘It helps to understand why you want these treatments continued. Can you tell me your reasons? ...
"Since we cannot reach an agreement about the best course of treatment at this time, I would like to get
some help for us. We have a policy at this institution to help us work through these disagreements. Until
this disagreement is resolved we will continue to help support you, and continue treating and ensuring
the comfort of your uncle.’
Potential benefits and limitations of adopting this approach

Top
Currently there is a huge variation in treatment intensity patients in
Summary
different hospitals receive at or near the end of life.79 The average Introduction
terminal length of stay varied between 9 and 27 days between Step 1. Obtain informed...
different academic hospitals in the United States, in some centers Step 2. When a...
36% of patients were admitted to a special care unit, while 9% were Step 3. When life-sustaining...
in others. The human and monetary costs of such treatment Step 4. Stopping death...
variation are immense. Given this level of variation in intensity of Step 5. Requests for...
care, if the approach proposed decreases the use of death- Potential benefits and...
prolonging treatments for hospitalized patients some potential References
benefits include:
1. Improved continuity: in an increasingly complex and fragmented health care environment,

following and recording clearly delineated steps in decision making and communication would

allow other members of the health care team to appreciate the stage of the decision-making
process and allow family members to receive consistent information.
2. Enhanced patient autonomy and comfort: better communication and more emotionally supportive
care would create an opportunity for patients and their family members to consider palliation as
an earlier treatment goal. This could result in the earlier provision of end of life care and prevent
unwanted or prolonged trials of life-sustaining treatments.
3. Earlier supportive interventions: early communication about death and dying, if done with tact
and sensitivity, would help identify patients and family members who could benefit from
education about the limits of modern medical treatments as well as earlier provision of
psychosocial, spiritual and emotional support.
4. Decreased demands for treatment and conflict: supportively and incrementally helping family
members to understand that death is unavoidable could help them accept treatment failure and
decrease the chance that there would be sustained demands for life-sustaining treatments.
5. Improved outcomes and better use of resources are also possible. Neither survival nor satisfaction
is necessarily improved with an increasing intensity of care. Paradoxically, in some areas
increased expenditures resulted in slightly worse outcomes.79 Even a small decrease in intensity
of treatment could have important resource implications since expenditures in the last year of life
represent 20–25% of all Medicaid costs.80
Limitations
The communication approach proposed in this article has not been validated and some studies cited are
based upon outpatients. Clearly changes in practice would need to be adopted cautiously and
incrementally by practicing clinicians. Finally, of course it is only likely to be effective when it enhances
the personalized attentive care that patients and their families require at or near the end of life.
References
Top
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Summary
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Introduction
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Communication Encouraging Optimal Care at Life For Hospitalized Patients

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A communication model for encouraging optimal care at the end of life for hospitalized patients -- Workman 100 (12):

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QJM 2007 100(12):791-797; doi:10.1093/qjmed/hcm114

A communication model for encouraging optimal care at the

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end of life for hospitalized patients This Article

University, Halifax Nova Scotia, Canada Services

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research is used to support the recommendations.

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Figure 1. Communicating with family members about initiating

View larger version (22K):

Step 1. Obtain informed consent for a trial of life-sustaining

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Step 2. When a patient's prognosis worsens

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Step 3. When life-sustaining treatment fail

Step 4. Stopping death-prolonging treatments

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Step 5. Requests for continued treatment

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explored.71 Simply declaring that treatment is ‘futile’ forecloses Top

Potential benefits and limitations of adopting this approach

1. Improved continuity: in an increasingly complex and fragmented health care environment,

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epidemiologic study. Crit Care Med (2004) 32:638–43.[CrossRef][Web of Science][Medline]

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maintaining care. Ann Intern Med (2000) 133:886–93.[Abstract/Free Full Text]

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preferences of elderly inpatients: a review of the literature. CMAJ (2003) 169:795–9.[Abstract/

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