Learning objectives

After completing this unit, you should be able to:

  • understand the overall aims and objectives of a Family Care Conference
  • understand the structure of delivering a Family Care Conference
  • demonstrate understanding of the principles of shared decision-making and their application during a Family Care Conference
  • demonstrate how to prepare for, conduct, document, and assess the outcomes of a Family Care Conference
  • demonstrate how to use the booklet “Providing Comfort Care to People with Dementia During Their Last Days of Life” during a Family Care Conference

What is a Family Care Conference?

In this resource, we use the term Family Care Conference to refer to a meeting to discuss comfort care with family carers of residents with advanced dementia. A Family Care Conference aims to:

  • improve communication between family carers and staff in your care home
  • prepare family carers for the eventual death of their loved one by enabling them to understand the disease trajectory of dementia, possible complications, and options for care – focusing on a comfort care approach and discussing why certain medical interventions and hospital admissions may be inappropriate towards the end of life
  • involve family carers in shared decision-making to support the needs and preferences of the person with advanced dementia as they move to the end of life.
  • reduce the uncertainty for family carers related to end-of-life decision-making for residents with advanced dementia

Dr Karen Harrison Dening and Dr Catherine Buckley outline how a Family Care Conference supports the planning of care for a person with dementia as they near the end of life:

Hosting a Family Care Conference

A Family Care Conference will follow these steps:

  • Preparing (arranging the meeting, giving/linking family carers the Comfort Care Booklet)
  • Conducting (carrying out the Family Care Conference with family carers)
  • Documentation (documenting the outcome of the meeting)
  • Follow-up (arranging a follow-up meeting if family carers desire one)

When planning a Family Care Conference, you should consider the following 4 points:

  • Where will the meeting take place? It should take place in a quiet room to minimise disruptions
  • When will the meeting be held and will you have enough uninterrupted time to facilitate the conversation?
  • Who should attend the meeting? This may involve more than one family carer and other staff; the involvement of more than one staff member can be a source of support
  • What will be discussed during the meeting and what is the primary goal?

During a Family Care Conference you will review the Comfort Care Booklet with family carers, discuss its contents, and address any concerns or questions they identify (before or during the meeting). The meeting should last no more than 1 hour and you should offer family carers the opportunity to have a follow-up meeting with you. A more detailed guide to facilitating a Family Care Conference is provided below:

Introduction

  • Introduce yourself and your role, and thank the family carer(s) for attending
  • State the purpose of the Family Care Conference, and explain its role in supporting the family carer(s) and other relatives, as well as the resident with advanced dementia
  • Advise them of the likely duration of the meeting (no more than 1 hour)
  • Introduce ground rules respectfully, such as phones being on silent and taking turns to speak, if more than one family carer is present

Determine their understanding of the purpose of the Family Care Conference

  • State the purpose of the Family Care Conference and check in with the family carer(s) to see if their interpretation of it aligns with what you have outlined. Reframe the purpose of the meeting if it does not
  • Identify any particular concerns or questions that the family carer(s) might have – prioritise these and confirm which will be dealt with at the meeting (if necessary, pass these on to the care home manager)

Determine what the family carer(s) already know(s)

Questions you could ask include:

  • “What have you been told about (their relative)’s current condition and the care we are providing them?”
  • “Can you tell me what your understanding is of their current condition?”
  • “Have you had a chance to look at the Comfort Care Booklet? Do you have any questions about it? Are there any areas of it in particular that you feel you would like to discuss with me today?”
  • “Do you have any concerns about the treatment or care plan for (their relative)?”

Discuss the Comfort Care Booklet

Be led by the family carer to see what they are ready or willing to discuss. Begin by discussing the purpose of the Comfort Care Booklet:

  • “How this meeting will be structured is flexible but the main goals are for you to tell me about your (relative), to review the Comfort Care Booklet and what parts of this you would like to discuss in detail, and to have a chat about any concerns or thoughts that you may have”
  • “The Comfort Care Booklet outlines some common symptoms people will experience towards the end of life. Although these symptoms are quite common, that does not mean (resident’s name) will have all these symptoms. This guide provides information about symptoms which may occur as your relative approaches the last days of life and how these symptoms may be managed by us“

Read through the Comfort Care Booklet with family carers

  • You might like to go to specific sections that are relevant for the person living with dementia that you think would be helpful to discuss
  • Check in with the family carer frequently to assess whether the discussion is progressing well or if it is not quite meeting their needs. For example: "Are we on track?"; "Is this what you wanted from today's meeting?"; “Is there anything you don’t understand?”; “Do you have any questions on this section?”; "What haven't we touched on that's important to you?". You could also take a short break during the meeting if you feel it is necessary to give family carers time to digest the information; if you do, remember to allow some time to refocus afterwards

Signpost family carers to further services and offer relevant written materials if necessary

This might involve signposting family carers to relevant local charities and organisations for additional support

Refer to the resident’s Advance Care Plan (ACP) if in place and relevant

  • You might like to highlight what aspects the person with dementia identified when they were able and discuss these with the family carers
  • Ask family carers what they understand about their relative’s Advance Care Plan, if in place. Answer questions on the content, and offer for it to be updated if they wish
  • If the resident does not have an Advance Care Plan in place, discuss its purpose with family carers and gauge their understanding of their relative’s wishes and preferences, especially with regards to Advanced Decision to Refuse Treatment (ADRT) and Do Not Resuscitate (DNR) orders

Conclude the discussion

  • Ensure family carer(s) understood the content of the discussion by summarising areas of consensus, disagreement, decisions made, and clarifying the forward plan arising from the meeting (e.g. "Are we all clear on the next steps?"). Invite family carer(s) to tell you their understanding of the next steps in the care of their relative (adopting a comfort care approach)
  • Ask if there are any further questions and if they would like to meet again (e.g. "What hasn't been covered today that you would have liked to discuss?" or "Are there any questions you had that haven't been answered yet?")
  • Remind family carers to review the resources discussed/signposted and identify a family spokesperson for ongoing communication. Thank them for attending

Documentation and follow-up

After concluding the Family Care Conference, document the following:

  • who attended
  • what decisions were made
  • the plan for follow-up
  • a summary of the main content of the discussion and any concerns raised by family carers
  • outstanding questions that you were not able to address during the meeting (sharing these with the care home manager if necessary)

Offer a copy of the main content of the meeting to the family carer(s) and share this with your care home manager

Advice and ‘top tips’ for facilitating a Family Care Conference

Dr Catherine Buckley, Dr Silvia Gonella, and Rita Brady offer you their advice and tips for running a Family Care Conference:

This video is a positive example of how to hold a successful Family Care Conference:

Unit 2 Quiz

Please answer the following questions to show how much you have learned from Unit 2: