Important and potentially difficult discussions are frequently necessary with palliative care patients who have active, progressive, far-advanced disease, regarding
breaking bad news
further treatment directed at the underlying disease
communicating prognoses
admission to a palliative care program
artificial nutrition
artificial hydration
medications such as antibiotics
do-not-resuscitate orders
Decisions must be individualized for each patient and should be made in discussion with the patient and family. The following guide is to help you plan for and hold such discussions.
Ask yourself these questions
Would you be surprised if this patient died of their disease within 6 months?
This may provide a better guide for decision-making, as attempting to prognosticate may be difficult and inaccurate.
Alternatively, assess how much the patient’s condition has deteriorated in the last month or six weeks, using observations by the team and objective measures such as x-rays and biochemistry.
Observations by close relatives often help.
What specific therapies are available to treat the underlying disease?
What are the percentage chances of significant clinical improvement?
Does that take into account the patient’s age and any other diseases/comorbidities?
How long would the improvement last? Days, weeks or months?
What are the percentage chances of serious adverse effects? __%
Does that take into account the patient’s age and any other diseases/comorbidities?
On balance, do the potential benefits outweigh the potential burdens?
About the Patient and Family
What is their understanding of the state of the disease and the prognosis?
Do they understand the goal of any treatments to be discussed (i.e. palliative, not curative)?
Do they understand the potential benefits and burdens of the treatment options?
What are their expectations? What are they hoping for?
What do you think their preferences are?
Appropriate setting
Discussions should be held in person and not by telephone, except when face-to-face meetings are not possible for geographic reasons
Privacy, prevent interruptions (leave your pager/mobile with someone else)
Sitting down so the patient and relative can see your face, not standing over the patient’s bed
Allow enough time
The patient has at least one family member or friend for support
Introduce the discussion
e.g. We need to talk about your current problems and our goals for your care
Find out what they understand
e.g. Tell me what you understand about your illness at the moment
Find out what they expect
e.g. Tell me what you see happening with this illness in the future
e.g. Tell me what things are important for you
Provide medical information, if necessary
in a caring and sympathetic way, not abruptly or bluntly
in a way they can understand
clearly (avoid euphemisms and medical jargon)
the medical situation
what treatments can be offered
the possible benefits and adverse effects of any treatments
as much or as little information as they want (if unsure, ask them how much they want)
use trained interpreters
Discuss realistic possibilities in the context of their view of the present and future
Discussing further active treatment for the underlying disease
truthful discussion of what therapy is or is not available
the benefits and burdens of any therapies
NEVER say "there is nothing more that can be done"
patients interpret this to mean no treatment for anything
it is never true
patients and families will feel abandoned
patients may be told there is no further therapy for the underlying disease, but the provision of continuing care and symptom control should be stressed
if further active therapy for the underlying disease is not appropriate, emphasize the positive aspects of symptomatic and supportive palliative care
Discussing prognoses
Explain the uncertainty in estimating an individual patient’s prognosis
Avoid precise prognostication
Give a realistic time range
Provide realistic hope—helping them achieve what is important to them
Recommend that family relationships and worldly affairs be attended to
Be prepared to answer questions about the process of dying. Remember, most people are more afraid of dying than of death itself.
Provide on-going support and counselling
Reassure about continuity of care
Discussing admission to palliative care
discuss palliative care in the context of how it can help them achieve their goals
e.g. You have told me you would like to…… Palliative care may be able to help you achieve what you want
emphasize the positive aspects of palliative care
e.g. living as well as possible, for as long as possible; not "giving up"
Discussing appropriate medical care
Issues related to the appropriateness of artificial hydration and nutrition, antibiotics and other medications are dealt with in the section on Ethical Issues
Explain the possible benefits and burdens (or futility) of any intervention
If agreement is not reached, the intervention can be trialled for a specified time
Discussing "Do-not-resuscitate" orders (DNR)
Introduce the discussion
e.g. We need to discuss something we discuss with all patients admitted to the hospital
Find out what the patient understands
e.g. What do you understand about your current medical problems?
Find out what the patient expects, what their goals are
e.g. What do you see happening in the future?
Discuss a DNR order in the context of the patient’s view of their future
e.g. You have told me you would like……so CPR would not seem appropriate if you died
If necessary, discuss
futility of CPR (chances of surviving to discharge)
indignity of CPR
being on a respirator in ICU and unable to communicate
Respond sympathetically to emotional reactions
Reassure patient that all other medical care will continue
If a patient clearly understands that they are dying and that the only care that they will receive is directed to their comfort, it may not be necessary to discuss DNR orders. If this is the case, it must be recorded in case-notes.
Respond sympathetically to emotional reactions
Agree on a plan, with provision that it can be modified if circumstances change
Remember, death is the natural end to life and is not a failure of medicine
Source
The IAHPC Manual of Palliative Care 3rd Edition Published by IAHPC Press ISBN 978-0-9834597-6-7 2013IKA SYAMSUL HUDA MZ