What matters to your seriously ill patient and how to incorporate that into care planning.

The issue: Why incorporating what matters to seriously ill patients is key to high-quality care

Ensuring our patients receive care that is consistent with their goals and values is a critical component of high-quality care.[1

Generally, clinicians avoid discussing prognosis, what really matters to the patient and end-of-life issues with patients because they feel uncomfortable having these conversations.

Their discomfort comes from:

  • a perceived lack of training
  • stress
  • not enough time to attend to what might come up for the patient
  • a fear of upsetting the patient
  • a feeling of inadequacy or hopelessness regarding availability of further curative treatment.[2]

Avoiding these conversations or only initiating them late in a person’s disease progression can lead to:

  • poorer patient quality of life and anxiety
  • family distress
  • prolongation of the dying process
  • unwanted and unwarranted treatments
  • patient mistrust of the health system
  • distress and/or
  • low value care in which seriously ill patients do not receive the kind of care they desire.[3]

Best practices

We should be supporting patients and their whānau to make better treatment and care choices by including what is important to them, their values, preferences and goals into the decision-making process.

Early conversations about what matters most to a patient and how we can work together to incorporate the patients’ values and goals into the care and treatment offered has been associated with better outcomes for patients and their families.[4]

Best practices in discussing goals of care include:

  • preparing for the discussion,
  • relating to the patient,
  • sharing prognostic information,
  • acknowledging emotions and concerns,
  • eliciting decision-making preferences,
  • understanding fears and goals,
  • exploring views on trade-offs and impaired function
  • wishes for family involvement and
  • encouraging questions.[3,4]

It is in the patient’s best interests to offer prognosis information rather than withhold it to protect the patient from losing hope or being upset. Patients and families want open and honest information and a balance between realistic information and appropriate hope. Evidence suggests that patients can engage in such discussions with minimal stress and maintain a sense of hope even when prognosis is poor.[4]

Effective communication plays a major role in helping patient and their whānau:

  • adapt to illness realities,
  • engage in appropriate decision-making and
  • maximise their quality of life

throughout the trajectory of a serious illness.

The Serious Illness Conversation Guide is a tool that will support you to have quality conversations with your patients in and outside of the hospital.

The Serious Illness Conversation Guide developed by Ariadne Labs[5] and adapted for New Zealand is a framework for best communication practices that clinicians are finding useful to structure and support shared decision-making in practice.

Why use the guide

The Serious Illness Conversation Guide is a tool that will support you to have quality conversations with your patients in and outside of the hospital.

The Serious Illness Conversation Guide is a set of structured questions to help clinicians who do not come from a palliative care background, have conversations with seriously ill people & their whānau about what is most important to them if time were limited and/or their functional abilities where to decline.

When clinicians face stressful situations, like a serious illness conversation, it helps to have language to turn to, to make sure you cover the key questions and address the important issues in an efficient and patient-centred way.

The SICG is made up of patient tested language and explores:

  • the person’s understanding of their illness
  • their preference for information
  • the sharing of a prognosis (this may be time-based, functional or uncertain)
  • exploration of the person’s:
    • goals
    • fears and worries
    • the abilities they find most important
    • the ‘trade offs’ they are willing to make for the possibility of more time
    • how much their whānau know
  • and concludes with shared planning and agreeing next steps which are consistent with the person’s values and goals.

Evidence

There is emerging evidence that shows that the Serious Illness Conversation Guide supports more, earlier and more person-centric serious illness conversations and that it is a feasible, acceptable and effective intervention that improves patient experience and outcomes for oncology patients.[6,7]

See the evidence page of Ariadne’s website.

Please send any questions or comments about the Serious Illness Conversation Guide to SICGadmin@hqsc.govt.nz.

References

1. BMJ 2015

2. Clayton JM, Hancock KM, Butow PN, et al. 2007. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in advanced stages of a life-limiting illness, and their caregivers. MJA Supplement 186: 12.

3. Bernacki RE, Block SD. 2014. Communication about serious illness care goals – a review and synthesis of best practices. JAMA Intern Med Doi:10:1001.

4. Wright AA, Mack JW, Kritek PA, et al. 2010. Influence of patients’ preferences and treatment site on cancer patients’ end-of-life care. Cancer 116: 4656-63; Detering KM, Hancock AD, Reade MC, et al. 2010. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 340:c1345; Temel JS, Greeer JA, Muzikansky A, et al. 2010, Early palliative care for patients with metastatic non-small-cell lung cancer. N Eng J Med 363: 733-42.

5. Ariadne Labs is an American non-profit organisation lead by Atul Gawande (author of Being Mortal). https://www.ariadnelabs.org/areas-of-work/serious-illness-care/ external link

6. Paladino J, Bernacki R, Neville BA, et al. 2019. Evaluating an Intervention to Improve Communication Between Oncology Clinicians and Patients With Life-Limiting Cancer: A Cluster Randomized Clinical Trial of the Serious Illness Care Program. JAMA Oncol doi:10.1001/jamaoncol.2019.0292.

7. Bernaki R, Paladino J, Neville BA, et al. 2019. Effect of the Serious Illness Care Program in Outpatient Oncology – a cluster randomized clinical trial. JAMA Intern Med Doi:10.1001.

 

 

Last updated 24/03/2020