Patients and families that want “everything” done

OVERVIEW

Patients and families, when asked, may say they want “everything” done (Gillis, 2008; Qill et al, 2009)

• The request for “everything” rarely really means “everything” – this needs to be explored
• Never ask a patient or family “Do you want everything?”!
• Sometimes the issue is actually clinician colleagues that want ‘everything’ – a similar approach is useful

This stepwise approach described here is largely a summary of that provided by Quill et al (2009), with modifications especially relevant to Australian critical care practice.

CHALLENGES TO THE HEALTHCARE PROVIDER AND FAMILY

Challenges to the Healthcare provider

• Prognostic uncertainty
  • multiple illness severity scoring systems and prediction models exist (see ICU Scoring Systems) however these cannot state with certainty what will happen to an individual patient
  • such certainty is rarely needed for clinical decision-making
  • need to consider mortality and functional outcomes
• Information from many providers
• Patient suffering
• Distress of staff- nurses, RT
• Time consuming
• Poor utilization of resources
• Feeling of lack of efficacy

Challenges to the family

• Unrealistic expectations
• Lack of knowledge of patient wishes
• Multiple decision makers
• “He/ She wants to live”
• Cultural issues
• Awaiting miracles

STEPWISE APPROACH

Adapted from Quill et al (2009):

1. Understand What “Doing Everything” Means to the Patient
2. Propose a Philosophy of Treatment
3. Recommend a Plan of Treatment
4. Support Emotional Responses
5. Negotiate Disagreements
6. Use a Harm-Reduction approach
7. How to proceed in difficult situations

1. UNDERSTAND WHAT “DOING EVERYTHING” MEANS TO THE PATIENT/ FAMILY

To quote Quill et al (2009): “The phrase “do everything” usually does not mean that the patient and family want every invasive and possibly life-prolonging treatment with a high burden and only a tiny chance of benefit”

• It is important to develop an understanding of what this means to the patient/ family through further discussion
• This allows the burdens and benefits of treatments to be balanced against underlying affective, cognitive, spiritual, or family concerns (Quill et al, 2009)
  • affective: anxiety, fear, concern about abandonment, depression
  • cognitive: incomplete understanding of condition, prognosis or therapies, reassurance that best medical care has been provided/ offered
  • spiritual: belief in the sanctity of life, trust in God’s will
  • family: family conflict, dependence
• “Do everything” may include different expectations about:
  • whether life is prolonged or shortened
  • the extent to which suffering is relieved or caused by interventions
  • different degrees of probability of the above being acceptable
• Examples of different treatment philosophies are listed in Table 1 of Quill et al (2009)
• Table 2 of Quill et al (2009) outlines patient concerns that may underlie requests to “do everything” and gives examples of useful questions to ask.

2. PROPOSE A PHILOSOPHY OF TREATMENT

After adequate exploration as described above, propose a treatment philosophy:

• “Given what we know about your illness and what I have learned about your priorities, it sounds like you would prefer the following balance of burdens and benefits in your treatment … ”
• “Does this make sense to you?”

3. RECOMMEND A PLAN OF TREATMENT

Once the philosophy of treatment is agreed, the physician can make a more specific recommendation about what should (and should not) be done

• talk about what will be done to achieve the patient’s goals before talking about what will not be done
• show how recommendations support patient goals and philosophies, e.g. recommendations about CPR, intubation, and other invasive treatments

4. SUPPORT EMOTIONAL RESPONSES

This discussion may elicit strong emotions, which should be explored and supported

• Acknowledge
  • e.g. “These are difficult discussions”
• Legitimize
  • “Anyone confronting these issues would feel scared”
• Explore the patient’s response
  • “What is the hardest part for you?”
• empathize with the patient
  • e.g. “I imagine that the future looks much less certain after this discussion”
• state commitment to continue to care for the patient no matter what the future holds

5. NEGOTIATE DISAGREEMENTS

The patient or family may still request therapies of marginal effectiveness that are outside the bounds of what the clinician considers appropriate. According to Quill et al (2009) the clinician should then:

• review their understanding of the patient’s condition, values, and philosophy to ensure common understanding
• reiterate his or her assessment of the patient’s condition and prognosis with or without treatment
• Look for common ground and try to invent new solutions that accommodate all perspectives

A useful approach, when there is diagnostic or prognostic uncertainty, is to perform a time-limited trial with appropriate limits to therapy

• this recognises that as clinician’s we do not have a crystal ball and sometimes patients with a poor prognosis exceed expectations, but also helps prevent unnecessary suffering when an anticipated poor outcome becomes increasingly likely
• tailor to the patient’s condition and treatment philosophy
  • e.g. “admit to ICU for inotropic support, with limits on intubation, mechanical ventilation, renal replacement therapy and CPR. After 3 days (3-7 days is usually appropriate) progress will be reassessed. If no sign of improvement or there is deterioration, then this intervention is not working and we should focus our care on ensuring comfort and stop any invasive measures.”
• however, when there is a high degree of certainty that treatment is non beneficial and will cause harm, a time-limited trial is not a useful strategy.

6. USE A HARM REDUCTION APPROACH

Occasionally, patients and families may hold prolongation of life as an absolute priority, even if it results in prolonged suffering or what some may perceive as loss of dignity. In this circumstance, a harm reduction approach may be useful:

• continuing to negotiate around limit setting is not productive, may feel abusive to the patient and family and may harm the therapeutic relationship
• typically this relates to CPR status, in this situation, a potentially useful harm reduction approach is to preserve the patient’s resuscitation status as “for CPR”. However, clinicians should then exercise judgement as to the duration of CPR. Effective resuscitation should be provided, but if there is no response to 1 cycle CPR can be stopped. This satisfies patient and family wishes while preventing futile therapy.
• avoid writing a unilateral ‘do not resuscitate’ (DNR) order if possible (and always discuss the DNR order with patient and family even if they disagree)

However, this approach is ethically problematic when there is a high degree of certainty that the treatment is non-beneficial and will cause harm (“First, do no harm”).

• treatment is non-beneficial
• harm is caused by complications of invasive therapies (e.g. broken ribs from chest compressions)
• palliative care and limitation of invasive therapies often do not shorten survival – in some studies early palliative care prolonged survival (Temel et al, 2010) – and tends to improve quality of life (Nipp et al, 2019).

7. HOW TO PROCEED IN DIFFICULT SITUATIONS

According to the Australian Medicolegal Handbook (2007):

• “health professionals cannot be forced to provide a treatment that they do not consider appropriate. While the law respects a patient’s decision to refuse treatment, it does not give them power to demand treatment. Treatments can be chosen from those offered; if a treatment is not offered, the law will generally not require it to be offered against the health professional’s judgment.”
  • in this circumstance, health professional’s may be challenged if:
    • there is a suspicion that the clinician’s assessment is incorrect or,
    • that the decision to withhold or discontinue therapies is based on non-clinical factors (e.g. nefarious reasons such as race or socio-economic status, etc)
• “The common law has always recognised the power of health professionals to make treatment decisions for incompetent patients under the doctrine of necessity, and most Australian jurisdictions have also recognised this power in legislation…. The doctrine of necessity requires health professionals to do what is necessary in the patient’s best interests. As part of that power it has been accepted that a doctor could withhold or withdraw life-sustaining treatments when they were no longer in the patient’s best interests. Because the common law does not recognise a right of family members to make decisions for incompetent adults, doctors are considered to be primary judges of the patient’s best interests, although there was an obvious need to consult with the patient’s family about this.”

Difficult circumstances include situations when:

• a competent patient, or an incompetent patient’s family, continue to disagree with the treatment plan and demand alternative treatments
• a patient has no reasonable chance of recovery but is currently being supported by invasive therapies (e.g. ECMO or mechanical ventilation), and patient or family refuse discontinuation of life-sustaining measures.

Useful strategies in difficult circumstances are:

• involve all senior clinicians involved in the patient’s care and develop a consensus
• obtain a second opinion
• ensure the patient and family are well supported and involve a patient advocate where appropriate
• maintain an ongoing dialogue with patient and family
• consider involving hospital ethicist and medicolegal team

THINGS TO NEVER SAY TO A PATIENT OR FAMILY

From Pantilat (2009):

• “There is nothing more to do”
  • implies abandonment, we can also relieve suffering and provide emotional and spiritual support
  • say “I wish there were something we could do to cure your illness,”… “Let’s focus on what we can do to help you”
• ““Would you like us to do everything possible?”
  • the reflex response is “yes”, but not “everything” is beneficial to the patient
  • better to ask “How were you hoping we could help?”; answers may include “make my breathing easier” or “I just need help”… We can always help (relieve symptoms or provide support)
• “We will stop the machines” [FULL STOP]
  • .. then what?
  • It is OK to say that something will be stopped, but emphasise the care that will still be provided e.g. “and will focus on keeping you comfortable so that you will die peacefully”
• “Withdrawal of care”
  • we never withdraw care, we withdraw interventions… the care continues!

COMMUNICATE EFFECTIVELY

From Gonzales and Pantilat (2019):

• Ensure good information from all clinicians
  • provide consistent, clear information
• Focus on the patient
  • Avoid detailed discussions of medical management
• Demonstrate caring, concern, and understanding
  • Listen
  • Stay engaged and collaborative
• Be direct, but only as direct as you can, e.g.
  • “Your mother is dying and unfortunately, nothing we can do will change that.”
  • “The question is not whether your mother will die, but how, when, and where.”
  • “I am worried that even with everything we can do, it will only prolong her suffering.”

Use the VALUE approach (Lautrette et al, 2009):

• Value and appreciate what the family members said
• Acknowledge the family members’ emotions
• Listen
• Understand who the patient was as a person by asking questions of the family members
• Elicit questions from the family members

CONCLUDING REMARKS

• “Do everything” can have many meanings, and must be explored
• Elicit and establish overall goals and treatment plan based on an agreed philosophy of treatment
• Provide the best possible communication and negotiate disagreements
• Consider harm reduction strategies, if appropriate
• Australian law respects a patient’s decision to refuse treatment, it does not give them power to demand treatment – health professionals cannot be forced to provide a treatment that they do not consider appropriate.
• Provide support to patient, family, staff, and yourself

“Two weeks in ICU can save an hour of conversation”
— Dr Will Cairns

References and Links

LITFL

• CCC — End of Life Care Family Meeting

Journal articles and books

• Gillis J. “We want everything done”. Arch Dis Child. 2008 Mar;93(3):192-3. doi: 10.1136/adc.2007.120568. PMID: 18319382.
• Lautrette A, Darmon M, Megarbane B, Joly LM, Chevret S, Adrie C, Barnoud D, Bleichner G, Bruel C, Choukroun G, Curtis JR, Fieux F, Galliot R, Garrouste-Orgeas M, Georges H, Goldgran-Toledano D, Jourdain M, Loubert G, Reignier J, Saidi F, Souweine B, Vincent F, Barnes NK, Pochard F, Schlemmer B, Azoulay E. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007 Feb 1;356(5):469-78. doi: 10.1056/NEJMoa063446. Erratum in: N Engl J Med. 2007 Jul 12;357(2):203. PMID: 17267907.
• Nipp R, El-Jawahri A, Temel J. Prolonged Survival With Palliative Care-It Is Possible, but Is It Necessary? JAMA Oncol. 2019 Dec 1;5(12):1693-1694. doi: 10.1001/jamaoncol.2019.3100. PMID: 31536103.
• Pantilat SZ. Communicating with seriously ill patients: better words to say. JAMA. 2009 Mar 25;301(12):1279-81. doi: 10.1001/jama.2009.396. PMID: 19318656.
• Stewart, C., Kerridge, I., Parker, M. (2007). The Australian Medico-legal Handbook. Australia: Elsevier Australia. [google books]
• Quill TE, Arnold R, Back AL. Discussing treatment preferences with patients who want “everything”. Ann Intern Med. 2009 Sep 1;151(5):345-9. doi: 10.7326/0003-4819-151-5-200909010-00010. PMID: 19721022.
• Quill TE, Arnold RM, Platt F. “I wish things were different”: expressing wishes in response to loss, futility, and unrealistic hopes. Ann Intern Med. 2001 Oct 2;135(7):551-5. doi: 10.7326/0003-4819-135-7-200110020-00022. PMID: 11578166.
• Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010 Aug 19;363(8):733-42. doi: 10.1056/NEJMoa1000678. PMID: 20818875.

FOAM and web resources

• Cairns W. We can improve how we deal with death, now. MJA Insight, 2016.
• Gonzales M, Pantilat S. Working with the family that wants “everything” done. UCSF Palliative Care, 2019.