During my last placement with a community matron team I had the opportunity to go to a palliative care workshop day that was organised and run by St Luke’s Hospice from Plymouth. It was a real whistle stop tour featuring different healthcare professionals as they covered four topics relating to palliative care which I’ll document below. Following the topics, we all took part in a case study exercise relating to “good and bad” palliative care.
This short talk was given by Macmillan GP Maria Earl and was all about how healthcare professionals can help to identify those individuals who might be palliative and why this is important. She explained that roughly 1% of the population are expected to die within the next year and stressed how vital it is that these patients are caught early on so that they can receive adequate care that meets their needs.
She explained that this enabled professionals to help patients to have a “good death” and to plan for what they wish to happen. This can involve limiting any treatments that might be futile for the patient, minimising side effects they might get from this treatment.
Being able to assist a patient is planning ahead can also help prevent a crisis situation, ensuring that relevant measures are put in place, such as emergency medications or hospital plans, before it ever gets to that stage. This kind of planning can allow the patient to communicate what care they want at the end of life, ensuring that it is appropriate for them and their needs.
She explained that there are a number of ways to help identify this 1%:
- Utilising disease trajectories
- The ‘surprise’ question: would you be surprised if this person died in the next 12 months
- General and specific indicators of decline
- Those patients in care/nursing homes
Advanced care planning
This talk covered everything involved in advanced care planning and was given by St Luke’s trainer Mike Thomas.
A statement of wishes: what does the patient want? What care would they like? Where would they like to die? Would they want X or Y treatment?
Will: emphasised the importance not only of encouraging patients to ensure they have a will, but also that someone knows where it is – friend, family etc.
Powers of Attorney: another really important legal document that’s part of the Mental Capacity Act. There are two different parts, one being financial and the other being health and welfare. It’s important to remember that just because someone may have PoA for one area, this doesn’t mean they can automatically have the other. There is also a Section 5 of the health and wellbeing PoA, where the patient can decline for the PoA to make decisions regarding end of life treatment.
Funeral plans: this goes along the same lines as the statement of wishes above, if the patient does have any specific wishes about what they’d like, its good to document and share these so they can be carried out.
Advanced directives to refuse treatment: this is always a really sticky situation, especially in emergencies, however anyone can make an advanced directive about refusing care and there is no legal obligation for this to be done through a solicitor – it’s covered under the Mental Capacity Act. The directive does have to state that the person does understand they are forfeiting lifesaving/sustaining treatment, and the speaker did emphasis that the clearer these wishes are, and the more people that know about this directive, the easier it is for different services to follow them. He suggested ensuring that the patient had a physical copy of it, as well as ensuring their GP is aware, and ideally a solicitor. He also said that its vital to ensure their family are also aware to prevent any confusion in an emergency.
The legal requirements for an advanced decision are that it might be written down, signed by the patient and by a witness. These are legally binding as long as they are valid, comply with the Mental Capacity Act and are specific to the situation.
Where does the patient want to be cared for: ensuring its documented in their care plans where they would prefer to be cared for/die. This could be at home, in a care or nursing home, hospital or a hospice.
What the patient doesn’t want to happen: this is just as important as what they do want to happen. Do they 100% not want to go into hospital for any treatment and want to stay at home? Or do they want every possible medical treatment available?
This talk was given by Palliative Care Consultant Doug Hopper and covered the realities of CPR in different situations and medical conditions.
He explained that CPR was originally only designed for specific conditions that would respond effectively to it and wasn’t intended to be used for everything. In 2014, the Tracey Ruling decided that CPR was a medical treatment and meant that medical teams could decide when it would be appropriate for patients, enabling them to decide whether they thought CPR was clinically appropriate, but that patients should always be involved in this decision unless there is very good reason not to be.
Here is a list of CPR success rates depending on certain factors (the ‘cancer’ groups are of course very overgeneralised due to the infinite types of cancers, but this just gives an illustration of the impact of having an underlying condition on CPR success). He highlighted that even though hospital success rates are much higher, half of these patients won’t go home.
|Non-shockable – PEA||10%|
|Non-shockable – Asystole||8%|
|Out of Hospital||5%|
|Metastatic Cancer Patients||0%|
He emphasised the importance of having a conversation with patients about the implication of CPR and how often patients and families often do not actually understand what occurs during the treatment as well as the potential consequences, such as hypoxic brain injuries or fractured ribs. He explained that often healthcare professionals avoid discussing these topics with their patients, sometimes assuming that it’s the role of another professional to initiate that talk; he said that everyone can potentially incorporate these conversations into their care from consultants to nurses to families, although of course make sure it’s appropriately timed.
If everyone involved in the patient care can initiate some sort of CPR decision earlier on in the treatment process and having everything clearly documented, it could help avoid the decisions being made during a crisis.
Mental Capacity act, independent mental capacity advocates and lasting powers of attorney
This talk covered a number of legal bits related to palliative care and was given by Palliative Care Consultant Sioned Evans.
Mental capacity act: one of the key acts governing patient care, that capacity is decision specific and reiterating the five principles of assessing mental capacity:
- the patient is assumed to have capacity unless assessed otherwise
- all practical steps must be taken for the person to make the decision,
- people have the right to make unwise decisions
- any acts done on behalf of another must be done in their best interests
- any acts done on behalf of another should be the least restrictive
IMCA: for those patients who do not have capacity and also have no one close who can help them make decision, or if there is conflict, then an IMCA can be assigned to them as someone who can act as an advocate.
LPoA: this was covered in one of the other talks, but reiterated how important it is to check PoA documentation – if this can’t be obtained from the PoA themselves, you can get a copy of it from the Office of Public Guardians.
Court Appointed Deputy: very similar to the LPoA but is obtained after the person has lost their capacity to appoint someone themselves. These are done through the Court of Protection.
This was a really useful training session and comprised several topics I had never considered myself as such a key part of patient care. Every day people enter hospitals and GP surgeries or are visited in the community that are at the end of the lives, and its really important that end of life care is included in their holistic treatment and that professionals are discussing with them what they want and need during this time.
Of course, it’s essential that the person actually wants to discuss these things first, but if they do, crack on and document it all – if they want something to happen (or not happen), this information needs to be shared. And while all of these talks advocated that anyone can discuss end of life stuff with patients, this isn’t always appropriate for student nurses – check with your mentor, don’t do it if you’re not comfortable, and always get advise from your mentor or palliative care teams etc beforehand.
It’s also really important to remember that it’s not just the patient involved that needs support, families, friends and even paid carers might need help in this crucial period of someone life (and once they’ve passed).
And lastly to quote my favourite ZDoggMD:
It always seems too soon until its too late
Talk about your end of life wishes now with those you love
St Luke’s link here. They have some great resources for patients, carers, families and professionals.
More about the Tracey Ruling here.
Gold Standard Framework for identifying those at the end of life is here.
Advanced decision guidance here.
Nursing students: spend time with the palliative care teams working in your area, acute and community. Learn what services they can provide (some teams will also sort out pain and symptom relief for non-palliative patients) so you can help your patients and their families/carers where ever they are.