Advance care planning for all blood cancer patients

This page provides information and guidance to support healthcare professionals with advance care planning conversations.

1. What is advance care planning?

In blood cancer, the nature of the condition is often that of a fluctuating course with highs and lows. For some, the lows may be serious where their lives are at immediate risk. Therefore advance care planning (ACP) is important to do while people are well, so they can think about and express what’s important to them.

Allowing patients the opportunity to understand their options and think about their preferences is a part of effective treatment planning and holistic care. Through advance care planning, you could empower patients to discuss their wishes not only with you but with their families if they have not done so already.

Advance care planning is a voluntary process that involves discussing future uncertainties with patients and finding out their preferences for treatment and care.

Advance care planning could include

Treatments they would not want to have should they be unlikely to be of much benefit. For example, advance decisions to refuse certain treatments.
A patient’s preferences about future care if their disease stops responding to treatment. For example, where they wish to be cared for, who their main support network is, and what matters most to them.
Discussing with a patient that in some situations, particular treatment methods (eg ITU or CPR), may be inappropriate or unlikely to be effective.
Discussing with a patient when they think the symptom burden would be too great for them to want to continue with treatment.

ACP allows you to empower patients, by acknowledging future uncertainties and exploring their wishes if circumstances were to change.

- Dr Rasha Al-Qurainy, Consultant in Palliative Medicine

2. Benefits of advance care planning

Advance care planning provides an opportunity for healthcare professionals to:

Facilitate patient understanding of their circumstances and current situation.
Help patients prepare and plan for their future in a personalised way, even if patients are not engaged with advance care planning formally.
Enable patients to express their preferences about their treatment and empower them with a sense of control over their health.
Foster stronger relationships with patients, and reduce compassion fatigue and burnout by knowing that they are providing the care that a person would have wanted.
Use advance care planning tools to document and communicate discussions.
Help create a smoother transition if a patient progresses to end of life, allowing timely support from hospice and community teams.

Advance care planning comes hand in hand with effective planning of care and treatment. It is a dynamic, ongoing process which should be reviewed regularly.

ACP allows you to “parallel plan” so you are able to advocate for them if the worst were to happen, whilst still hoping for the best outcome.

- Dr Rasha Al-Qurainy, Consultant in Palliative Medicine

3. The “elephant in the room” – initiating conversations

It’s important to acknowledge that facilitating conversations around advance care planning (sometimes referred to as future care planning) and patients’ future preferences can be difficult.

Below are some examples of questions that might help you initiate and open the conversation.

Talking about the future

I’m interested to know how you feel things are going.
Have you thought about the future?
What do you understand about this disease and how it can progress?

Asking about any previous discussions

Have we asked you about any of your preferences for your future care? (Asking patients if they have already had any discussions with other members of the team (for example their CNS) or their family about future care can itself be the conversation starter.)
I see we have previously recorded some of your preference for future care, can we revisit these to check they are still the same? (Checking back on notes and revisiting anything that's already been recorded can also be a conversation starter.)

Asking specifically about advance care planning

Acknowledge that the topic may be difficult for patients to speak about, but that opening up this conversation is important. Some patients are already open to having these conversations.
I understand you feel worried about successive treatments not working in the future – would it be helpful to discuss what we would need to consider at that time?
I understand you are worried about your current situation, which is completely natural. Would it help to talk about the treatment options that are used in critical situations? It’s far better to discuss this now while you are well, in case in an emergency you can't tell us what you want.
Is there anyone else you’d like to involve in these conversations?

Seeking advice from the wider multi-disciplinary team (MDT)

You may be unsure in which direction the conversation will go, or how big a topic it’s going to be. Perhaps it’s the first time you’ve spoken with your patient about their wishes, or perhaps their circumstances have changed drastically.

You can seek additional advice and guidance from the palliative care team, whether from your Hospital Palliative Care Teams or the patient’s local community palliative care teams.

The presence of a palliative care specialist is further reinforced by NICE recommendations to include them as core members of the haemato-oncology MDT (see 1.3.9).

How to support your patients during the conversation and afterwards

Of course no two conversations will ever be the same, but having some structure in mind for the conversation will help to really get what you and your patient need from advance care planning discussions. Below is some guidance on how to structure your conversations.

During the conversation

Learn what the patient's understanding of advance care planning is.
Explain advance care planning by giving real examples to patients. Often if patients haven't considered advance care planning yet, then they don't really know what sorts of things they may wish to think about (eg advance decisions to refuse treatment, appointing a Lasting Power of Attorney).
Listen, explore and validate patient concerns. It is normal for patients to be thinking about their future.
Allow patients time to think during the consultation.
You can still continue to confirm hope for treatment to work alongside these conversations.
Remember, you aren’t trying to do it all in one conversation. Just opening the conversation is a good step, then the topic can be explored and revisited over time.
Listen out for cues that patients may want to discuss curative and palliative care in parallel, if both are possibilities.
Showing empathy is important to build trust and rapport, which means you can really act in patients’ best interests when required.
If patients want to include their family in the advance care discussions, then it may be helpful to initiate this as early as possible. Document this clearly.

Questions to help patients think about preferences

What do you consider most important in your life?
When you think about the future, what matters most to you?
What are the things that we need to know about you?
If you become seriously unwell, what can I do to support you?
If you become seriously unwell, are there any treatments you would not want? We can talk more about what these treatments are.

Giving information to help the patient take part

Provide patients the information they want or need to support these conversations, in a way they can understand – clear and free of jargon.
Work in partnership with patients and tailor information to their preferences, respecting their wishes and recommending care based on what is important to them.
Be open about the benefits and risks of the types of interventions related to advance care planning (life-prolonging treatments such as ventilation or CPR). Be clear that in a critical situation, you will use your clinical judgement to make decisions in the patient’s best interests.

At the end of the conversation

Summarise discussion points to check understanding and that everybody is clear.
Affirm your commitment to support patients in the best way possible.
Offer follow-up if the patient needs time to think or speak to their family.

4. When is the right time to start this conversation?

We know that a patient’s condition can deteriorate quickly in blood cancer, and that there is a lot of uncertainty, so it’s a good idea to open this conversation when patients are well and as early as possible, as part of their holistic care. Don’t wait for the patient to bring it up – they may not know it’s an option to express preferences for the future, or they may be thinking about it but aren’t sure whether or how to bring it up.

When patients are not on the path of advanced disease, it is much easier for you and them to discuss hypothetical scenarios. Once the conversation is initiated, it becomes easier to continue addressing the future preferences of patients.

You can still explain that future treatments can continue to be curative, but some patients do transition to supportive care as part of their treatment pathway. It is important that patients are aware of this in order to manage expectations.

The rapid decline seen with some haematology patients is reported to delay the identification and communication of transition from a curative to a palliative focus of care. However, there are some clinical indications that a patient is progressing, and if advance care planning hasn’t happened yet then it needs to: increasing number of treatments, if and how often the patient has relapsed, shorter times in remission, signs of increasing symptoms, more frequent hospital stays, and indications of refractory disease.

Remember to record discussions

It's recommended to record these discussions in a shareable format such as using the nationally recognised ReSPECT form or the electronic Universal Care Plan for London so that other healthcare professionals can access this information if needed in the future.

Other resources

This web page is about the benefits of advance care planning and gives guidance on initiating and managing conversations about advance care planning. We have not covered the further information you would need in order to facilitate these advance care plans, and information about planning for the end of life, but there are many more sources of information listed below. We aim to continue to develop our content on this topic to cover more of these aspects.

Facilitating advance care planning

Advance decisions to refuse treatment and Do not attempt CPR decisions - Information from the NHS on how to facilitate these types of advance care planning.

Lasting Power of Attorney - Government information on how to appoint a Lasting Power of Attorney.

Compassion in dying - Support to help patients prepare for the end of life, and helpful information and resources for healthcare professionals.

Marie Curie resources - Marie Curie has a section for healthcare professionals that lists resources produced by a wide range of organisations, which focus on palliative and end of life care.

‘Talking about dying’ report from the Royal College of Physicians - This provides advice and support for any doctor on holding conversations with patients much earlier after the diagnosis of a progressive or terminal condition.

Gold Standards Framework - A leading provider of accredited end of life care training for frontline health and social care staff in the UK.

NICE guidance - Guide to advance care planning for registered managers of care homes and home care services.

End of life guidance

NICE guidance - NICE guidance on managing symptoms (including at the end of life) in the community.

NICE guidance - NICE guidance on end of life care for people with life-limiting conditions.

Guidance around end of life care in an acute care setting - Guidance from the Royal College of Physicians.

Communication skills training

Royal College of Nursing and Royal College of Physicians e-learning modules on Breaking bad news.

e-Learning for Health by Health Education England.

VitalTips by VitalTalk (from USA) – Their website has video examples and quick learning guides on talking about serious news or prognosis.

ReSPECT Learning, hosted by Resuscitation Council UK, is a mobile and web app with learning modules on talking about advance care planning.

E4CH (Effective Communication for Healthcare) - Scotland’s NHS communication training programme, including the DoctorsTalk app.

Thank you to Dr Rasha Al-Qurainy MD, MSc, FRCP (Clinical Lead and Consultant in Palliative Medicine), Dr Gehan Soosaipillai (Transforming End of Life Care Team Fellow), and Dr Liam Stapleton (Improvement Fellow) for their support with the content of this page.

This page was last medically reviewed and updated in August 2024.

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