Many people with pre-existing health conditions, including some myeloma patients, may be faced with discussions around advanced care planning and their preferences towards the end of life. These conversations are designed to offer patients the opportunity to discuss their future and make their wishes known. Although these conversations are difficult, it is important to start them early when you have time to understand your options and discuss your preferences. We’ve highlighted some points that may be helpful to think about and prepare you for these discussions.
Why should I have these conversations?
Advanced care planning discussions are a normal and important part of a patient’s treatment and care.
Thinking about the end of life does not bring it closer, and it may bring peace of mind. Making plans can be reassuring, allowing choice and control over what happens in the future, as far as is possible.
In life, circumstances can change very quickly, but by planning ahead you will be able to discuss advanced care in a more considered way and not in a pressurised circumstance, for example in an emergency admission. You will be more prepared, feel more in control and you may find any fears or concerns easier to cope with. It can also be a relief for those close to you to be made aware of any choices you make so they can try to respect your wishes.
When and how should I discuss advanced care?
Conversations about advanced care planning should be done appropriately and sensitively. They may happen at multiple different times over the course of your treatment to give you the opportunity to reassess your preferences, if needed. Your doctor may bring up this topic during an appointment or you can raise it yourself. While these conversations would usually be done in person during your clinic appointment, you may find that in the coming weeks they are carried out over the phone while the NHS is aiming to reduce the number of patients in hospital.
It is challenging to find the right time to start a conversation about advanced care planning and it can be difficult if this topic is brought up unexpectedly, especially if you do not feel ready for it. You may want to take time to think about your preferences and then revisit the conversation with your doctor at a later date.
It is likely that these conversations will be occurring more often during the COVID-19 outbreak due to the severe risk that the coronavirus poses to myeloma patients. Doctors will be wanting to ensure patients and their family are fully informed and prepared in the event of an emergency situation due to COVID-19.
If you have not had an advanced care discussion with your healthcare team you may want to initiate the discussion yourself.
What might be discussed?
In an advanced care discussion your doctor will talk you through what could happen if you became critically ill due to your myeloma, a treatment side effect or a serious infection. They will discuss the different types of interventions or treatment available (e.g. CPR, ventilation, palliative care), talk you through any emotional and physical impact they may have and how successful they are likely to be.
Your healthcare team may have recommendations as to what would be appropriate for you. They will also ask you about your preferences and wishes for care at the end of life.
How will the discussion be recorded?
Decisions can be captured in a number of different ways and specific documents.
Advanced Care Plan
An Advanced Care Plan is where you leave instructions about the future care you want to receive. This can help other people to fulfil your choices and wishes should you become too unwell to communicate them for yourself.
It is a written document and can cover almost any aspect of your care. Your preferences might include:
- Your choices about where you want to be cared for at the end of life, e.g. at home, in hospital, in a nursing home or a hospice
- How your religious and/or spiritual beliefs should be respected
- Any special requirements about food or drink
- Decisions about the type of treatment you do or do not want
Your Advance Care Plan can also name who you would like to be consulted about your care, such as your partner. It is not a legal document, but healthcare professionals can use it to support you.
A Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) order is a form that instructs your healthcare team not to attempt cardiopulmonary resuscitation (CPR) should your breathing or heart stop. It is not legally binding but can be used to communicate to your healthcare team your preferences.
If, after careful consideration, you do choose to sign a DNACPR form, bear in mind that it is not permanent and it can be withdrawn at any time if you change your mind. Your healthcare team will keep your decision about CPR under review, in particular if your condition changes, you move to a different care setting or you go home after a time in hospital. If you are in an emergency situation and you change your mind, you should tell the team treating you at the time.
An Advance Decision to Refuse Treatment (ADRT) is a written instruction that you can use to record specific decisions about the refusal or withdrawal of treatments if you become unable to make or communicate decisions for yourself. This can then be used by your healthcare team and family should you become unable to communicate your wishes yourself. An ARDT can also be known as a ‘Living will’ or ‘Advance Directive’.
It can be used to refuse any medical treatment including life-sustaining treatment, like CPR, being put on a ventilator or being given food or fluids artificially.
An ADRT may bring a sense of personal control, but it needs to be very precise about what you want to happen and when, and it must be written correctly and signed for it to be a legal document. It is important to know that you can cancel or alter your ADRT at any time, as long as you still have the capacity to do so. You can cancel it either verbally or in writing, but you should try to tell everyone who knows about your ADRT that you have changed or cancelled it.
Although advanced care planning may feel like a worrying conversation to have for some patients, it is important to remember that these conversations are standard practice and provide patients with the opportunity to make decisions around their future treatment and care.
If you would like to find out more about advanced care planning, see the Planning ahead: an Infopack for myeloma patients from Myeloma UK. You can also call the Myeloma Infoline on 0800 980 3332 to speak to one of our Myeloma Information Specialists or email firstname.lastname@example.org.