COMMUNICATION WITH PATIENTS

COMMUNICATION WITH PATIENTS

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.

BEFORE THE DISCUSSION

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?

THE DISCUSSION

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

IKA SYAMSUL HUDA MZ