Advance care planning for healthcare professionals

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. Advance care planning is therefore important 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 involves discussing future uncertainties with patients and finding out their preferences for treatment and care. This 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, 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. 

We’ve worked with haematology and palliative care professionals to put together this content to support you to facilitate advance care planning conversations.

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 in relation to their treatment.
• 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.

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, and the coronavirus pandemic adds another layer of complexity.

The current situation demonstrates exactly why it is important to understand your patients’ preferences. The likelihood is that blood cancer patients may already be thinking more about their future due to coronavirus, particularly as they are in the very high risk group.

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?

Talking about COVID-19

• What have you been thinking about COVID-19 and your situation?
• Have you thought about what happens if you get seriously ill, from COVID-19 or anything else? Do you have any questions for us about that?
• If you do get coronavirus, there is a chance you could become seriously ill, and unable to advocate for yourself. Who would you want to advocate on your behalf?
• If you become seriously unwell, are there any treatments you would not want? We can talk more about what these treatments are.

Some of the questions in this section have come from www.resus.org.uk/respect

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).

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.

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-saving 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.

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 move onto palliative 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.

In light of the coronavirus pandemic, with the increased risk of haematology patients to become seriously ill and unable to advocate, discussing patients’ future preferences are important.

It is important to reassure patients that their healthcare team is making decisions on care plans based on their individual circumstances to protect them, but to also acknowledge that because of their blood cancer and previous treatment, they may not be able to respond to the virus as well. Use open and guiding questions (see above) to initiate the conversation and help patients to think about these things.

There are particular scenarios that during the pandemic are different from the usual treatment pathways. For example, normal support mechanisms will not be present if relatives cannot visit. This is why initiating conversations around advance care planning can be even more useful for haematology patients in the current climate.

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.

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

Please do get in touch with us if:

• there is anything you feel that Blood Cancer UK could be doing to support your work
• there is a resource that has been helpful to you that is not listed here
• if there is content here that you believe is inappropriate or outdated.