Bradford VTS Online Resources:
Cancer & Palliative Care
Bradford VTS Clinical Resources
- by Dr Ramesh Mehay
- Last modified: 6th February 2024
- No Comments
DOWNLOADS
path: PALLIATIVE & END OF LIFE CARE
WEBLINKS
- Cancer Maps – Ben Noble’s
- Cancer Maps – YouTube Tutorial
- Q-Cancer score
- RATS – symptom probability of cancer
- End of Life super-condensed curriculum – what you should know (RCGP)
- Palliativedrugs.com
- WMPCP Symptom Control in Palliative Care website (Amazing!)
- Bradford & Airedale Palliative Care Guidance (Excellent too)
- Yorkshire & the Humber – Symptom Management in Palliative Care 2019
- WMPCP Symptom Control in Palliative Care as a pdf
- CLiP (Newcastle) – these 15 min worksheets are brilliant!
- CRUK – gp trainer hub – tools for teaching your trainee
- CRUK – diagnostic tools for use in cancer
- CRUK – causes of cancer and ways to reduce risk
- CRUK – cancer treatment and other post-diagnosis issues
- CRUK – cancer statistics
- CRUK – cancer screening
- CRUK – learning, support and resources for health professionals
- OSCEs in Palliative & Cancer Care (BVTS)
- BMJ audio – Emergency Care Plans
- ReSPECT form
- The Other Side – a true story of one doctor’s journey as a patient coming to terms with a terminal cancer diagnosis
OTHER USEFUL BITS n BOBS
- The Yorkshire Symptom Management booklet is now available as an app on Apple and Android
- The Palliative Care Guidelines website – has a helpful section on syringe driver compatibility
- Dr Kathryn Mannix, a retired palliative care consultant, has produced a short video explaining the dying process in non-medical language: YouTube-Mannix
IMPORTANT OTHER BVTS WEBLINKS
FOR PATIENTS
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Information provided on this medical website is intended for educational purposes only and may contain errors or inaccuracies. We do not assume responsibility for any actions taken based on the information presented here. Users are strongly advised to consult reliable medical sources and healthcare professionals for accurate and personalised guidance – especially with protocols, guidelines and doses.
COME AND WORK WITH ME… If you’d like to contribute or enhance this resource, simply send an email to rameshmehay@googlemail.co.uk. We welcome collaboration to improve GP training on the UK’s leading website, Bradford VTS. If you’re interested in a more active role with www.bradfordvts.co.uk (and get your name published), please feel free to reach out. We love hearing from people who want to give.
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Cancer basics
Number staging is used to divide cancer into grades (see right hand box).
Staging interpretation (in general)
- Stage 1 means the cancer is small and contained within the organ it started in.
- Stage 2 means the tumour is larger, but still hasn’t spread into the surrounding tissues.
- Stage 3 means the cancer has started to spread into surrounding tissues and lymph nodes.
- Stage 4 means the cancer has spread to another organ altogether, and is also known as metastatic cancer.
There are new treatments appearing all the time. And it is a developing field. There was a time, when being diagnosed with stage 4 cancer was something of a death sentence. Yet some people are now living longer and more comfortably than ever before, possibly for decades, with a chronic condition of cancer.
The reason why stage 4 has always been difficult to treat is because it means the original cancer has had time to evolve and spread around the body. The longer a cancer is left, the longer its cells have to evolve. With stage 4, genetically speaking, there may be hundreds of different cancer cells within a tumour, which then start to break away and spread around the body, squirming and burrowing into different parts. These cells can often slip “behind barriers” that protect them from chemotherapy, or into the bones, where they “tended to stay”, making many treatment options, until now, limited.
So stage 4 really used to be thought of as a death sentence. But things are improving drastically all the time. While people with stage 4 cancer used to move to palliative care, now (in some cases) new drugs are keeping pace with their disease. While stage 4 is rare to cure completely, some patients these days are still living with their tumour 10+ years after diagnosis. With time, and new research drugs, this is going to become increasingly common – because the newer drugs are smarter and more targeted – working on the specific genetics of the tumour and our immune systems.
HIV was once a deatg sentence, but now it can be well managed with maintenance medication – so much so that it is now considered a chronic condition that people live with rather than a terminal illness like it was in the 80s and 90s. Hopefully, cancer will be the same.
Currently, treatments for breast, prostate and testicular cancer look promising. Others with poor prognosis, like pancreatic cancer, are still very hard to treat.
For example,
- Duran Duran’s Andy Taylor was diagnoses with incurable stage 4 metastatic prostate cancer back in 2018.
- As of 2024, he is still going strong thanks to Lutetium-177, or Lu-SMA, a radioactive therapy used intravenously to target cancer cells, that he identified as an option for.
- As of 2024, he remain asymptomatic.
The hardest thing about stage 4 for patients is the mental toll
- Often, doctors avoid that bit – and it doesn’t help. Imagine how hard it is for the patient to face an uncertain future. Thinking they are going to have to say goodbye soon to family, friends and loved ones. Not seeing daughters or sons get married. Missing out on birthdays and so on.
- Of course, as a health professional you should not give false hope. But equally, it’s wrong to give out a generic expression of doom and gloom. Instead, liaise with the oncologist and other cancer care specialists. See what they feel the prognosis is. And then work from there.
- At the moment, for many patients, treatment may stop working at some point, leading them to the cancer journey they don’t want to be on. It’s important for health professionals just to be there, to listen, to counsel, to comfort. At this point, help the patient lament and don’t be in too much of a rush to fix, fix and fix – when there is no fix to be had.
- Also, please put patients in touch with Maggie Centres – which has psychologists around the UK. With meditation and mindfulness, the can help patients to live in the present, and not race ahead to the future where all their fears are. Not knowing what is going to happen is the hardest part, but it is unwritten as it is for the rest of us.
Palliative Care at a Glance
Compared to other countries palliative care in the UK is exceptional. They say that a palliative care patient in the last few months of their life are more likely to have a good death than a non-palliative care one. This is because of the network of healthcare professionals that are available and you keep an eye on the patient throughout the last year.
Mostly, palliative care patients are looked after and managed by their general practitioner, district nurses, other community nurses, and community palliative care nurse (a MacMillan nurse). If patients become troubled by symptoms that are difficult to control, they are then usually referred to the palliative care team or hospice, where they will be either managed by a consultant or admitted to a bed. Once stabilised, they are then discharged back to the community for the GP and district nurses to manage.
The patient has an active, progressive and usually advanced disease for which the prognosis is limited (although it can be several years) and the focus of care is quality of life. They should be on the GDF register. And the patient has hopefully consented to you referring to Palliative Care services.
You may want to refer on the grounds of one of the following unmet needs:
- uncontrolled or complicated symptoms.
- Specialised nursing – referral for IV therapies
- Complex psychological/emotional issues.
- Complex social issues.
- Difficult decision making about future care.
- If a patient’s pain is not controlled, increase the 24h opioid dose by 1/3rd. So, if they are on MST 30mg bd, increase to 40mg bd.
- If you are increasing the regular pain relief dose, then remember to increase the breakthrough dose too.
- The breakthrough dose of opiates is 1/6th of the total daily dose of opiates.
(MST 15mg bd = breakthrough dose 5mg oramorph. MST 30mg bd = breakthrough dose = 10mg oramorph). Please double check with senior if unsure.
Remember to calculate this and include patches as well as oral medications and syringe drivers. Ask palliative care for advice if needed. - When starting a syringe driver don’t remove an existing opiate patch but continue to change it when scheduled.
If their background opiate analgesia needs to be increased add it into the syringe driver and update the PRN dose calculation.
- Remember not all pain is opioid responsive.
It can be helpful to ask the patient whether previous background dose increases made a difference or whether PRN opioid doses help- if the answer is no, consider adding an adjuvant rather than continuing to increase opiates. For example, bone pain from bone mets – usually responds better to NSAIDs than opioids. - Know the features of opioid toxicity (confusions, picking at things in mid air, hallucinating). Most likely if opioid doses increased too much too suddenly.
- Always double check or even triple check your calculations. Ask a colleague to double check if you want to be even more safe.
- Levomepromazine is an excellent anti-emetic in palliative care which covers a wide range of receptors and has a long half-life.
The oral and sub-cutaneous dose for nausea is 2.5-6.25mg.. The 25mg tablets cut into quarters are considerably cheaper than the 6mg tablets but you may need to switch to these if the 6.25mg dose is too sedating. - There are loads of good guides on palliative care symptom control drugs (e.g. nausea, vomiting, constipation, pain and so on). See resources above.
- H – Hypercalcaemia
- H – severe Haemorrhage
- S – neutropenic Sepsis
- S – Spinal cord compression
- S – Superior vena cava compression
Non-cancer Palliative Care e.g. CHF
- How to recognise patient with HF approaching end of life
- GSF Prognostic Indicator Guidance (at least 2 of):
- Surprise question applicable ‘Would you be surprised if this patient were to die in the next few months, weeks, days?’
- NYHA stage 3/4 with ongoing symptoms despite optimal therapy
- Repeated admission with HF – 3 admissions in 6/12 or 1 admission aged >75 (50% 1 year mortality)
- Difficult ongoing physical or psychological symptoms despite optimal tolerated therapy
- Additional features: hyponatraemia, high BP, declining renal function, anaemia
- GSF Prognostic Indicator Guidance (at least 2 of):
- Disease-modifying therapies at maximally tolerated doses also help to alleviate symptoms. This includes ACE inhibitors, beta-blockers and aldosterone antagonists.
- Opioids can be useful for managing breathlessness in heart failure.
- Low dose oral morphine is the usual first line opioid (e.g. morphine MR 5mg BD or 2.5-5mg morphine PRN).
- If there is significant renal impairment (eGFR <50) then consider low dose PRN morphine or oxycodone first line instead – discuss with specialist palliative care if unsure.
- Evidence suggests that when used for breathlessness, opioid doses in excess of morphine 30mg (or equivalent) are associated with increased mortality, so total daily doses should remain below this.
End of Life Care
- On top of GP and district nurse involvement there may be greater input from the Macmillan nurse and the palliative care team.
- Referral to specialised services like the Gold line in Bradford ensure that the patient can get immediate health input should it be required.
- Anticipatory medication will usually prescribe at this stage. It is also at this stage where syringe drivers are usually set up.
- Sometimes, the immediate release of funding (called FASTRACK FUNDING – not to be confused with a 2ww fast track referral) is required to put measures in place to tackle healthcare needs and this is often started by the district nurses and signed off by a GP.
- Any previously filled in RESPECT FORM should be revisited and updated.
- Start Anticipatory Medication if you think the patient has less than 6 months to live. Only cost £30 or so.
- There are 4 that are routinely prescribed – detailed in the boxes on the right. But the MINIMUM is an opioid and midazolam
- Frequeny: A lot of places say repeat doses after every hour. In Yorkshire we feel that is too long and puts patients in unnecessary distress, as well as doctors and healthcare staff. Especially when the patient is in the late stages of their terminal illness. Yorkshire palliative care say – you can repeat doses every 30 minutes but if you need more than four doses in any 24-hour period contact palliative care service in case they need a syringe driver or an alternative drug
(1) Opioids
- Usually for pain/breathlessness
- Examples: Morphine Sulfate or Diamorphine – check your area.
- Morphine sulfate injection (10mg/ml ampoules) -Supply ten (10) 1ml ampoules*
- Dose for opioid naive patient: 2mg to 5mg SC, repeated at hourly intervals as needed for pain or breathlessness
- If patient already on opioid, convert and work out the right dose using a calculation chart (ask a colleague if you don’t know how to do this – remember, the wrong dose can kill someone)
- If 3 or more doses have been given within 4 hours with little or no benefit seek urgent advice or review
- If more than 6 doses are required in 24 hours seek advice or review
(2) Anxiolytic
- Usually for agitation/breathlessness
- Usually Midazolam
- Midazolam injection (10mg in 2ml ampoules) – Supply ten (10) ampoules of 2ml
- Dose: 2mg to 5mg SC, repeated at hourly intervals as needed for anxiety/distress
- If 3 or more doses have been given within 4 hours with little or no benefit seek urgent advice or review
- If more than 6 doses are required in 24 hours seek advice or review
- If the patient is already on large background doses of benzodiazepines, a larger dose may be needed (if they are frail, a smaller dose may be sufficient)
- Levomepromazine can be used in terminal agitation or agitated delirium under specialist advice at a different dose
(3) Antisecretory drug
- Usually for respiratory secretions
- Usually Hyoscine Butylbromide
- Hyoscine butylbromide injection (Buscopan®) (20mg/ml ampoules). Supply 10 ampoules
- Dose: 20mg SC, repeated at hourly intervals as needed for respiratory secretions
- Maximum of 120mg in 24 hours.
(4) Anti-emetic
- Usually for nausea & vomiting
- For example: Levomepromazine
- Levomepromazine injection (25mg/ml ampoules). Supply 10 ampoules
- Dose: 2.5mg to 5mg SC, 12 hourly as needed for nausea. May need to be given more frequently initially, for example hourly, to control symptoms.
- If 3 or more doses have been given within 4 hours with little or no benefit seek urgent advice or review.
- If more than 6 doses are required in 24 hours seek advice or review.
- Levomepromazine can also be used in terminal agitation or agitated delirium under specialist advice.
- Where ever you are, there will be 24/7 Palliative Care Consultant support if you need advice about palliative care issues.
- When you prescribe anticipatory medication, particularly for patients in care homes, task the District Nursing team. They will also make contact to support good end of life care, not just administer medications.
- Your medical computer system (EMIS, SystmOne etc) – will have sections to make prescribing easier . For example, there will be drop-down boxes with medication names and doses on the Anticipatory Medication and Syringe Driver charts. Ardens also has a brilliant section on Palliative Care to make your life easier.
- This can happen in 10-20% patients with Lung Cancer. It’s horrible to see and very distressing for patient, family and staff. Mortality is high.
- So, always write up midazolam for Lung Cancer patients in case this happens.
- In the case of massive terminal haemmorrhage, give 10mg stat doses IV or IM deltoid/gluteal
Other things you can do
- Try to remain calm. Call for help.
- The patient will be scared. Talk to the patient and comfort them and don’t leave them.
- If the patient is clearly dying, support and non‑pharmacological interventions are more important until help arrives than trying to give sedative medication; the patient will usually lose consciousness rapidly and may be frightened especially if left alone.
- Risk of asphyxiation is greater than the risk of exsanguination. So maintain the airway. Use Oxygen and suction if available.
- If the bleeding site is known, lay the patient on the bleeding side to reduce effect on the other lung.
- Alternatively use a head down position if possible to aid drainage of blood.
Making tough decisions
- CPR success rate is 12% in general.
- CPR success rate in CCU with all equipment and doctors to hand is 20% (= only 8% bettter)
- And even if CPR is successful there is a 30% chance that the patient will end up with a new morbid condition – for example, brain injury, renal injury, severe pain post rib fractures and so on.
- And patients need to know this because the benefits of CPR and its success rate are overplayed by TV dramas and the detrimental consequences not discussed. There’s a very good leaflet from West Yorkshire – https://www.wypartnership.co.uk/our-priorities/mental-health/mental-health/advance-care-planning
https://www.resus.org.uk/respect
What is it
- Recommended Summary Plan for Emergency Care & Treatment
- A personalised future emergency plan. One section of the Advanced Care Plan umbrella – specifically focusing on “in the event of an emergency”.
Why ReSPECT? What was wrong with DNACPR?
- DNACPR – often negative for patients (because they are not involved), and negative for docs (who don’t like doing it/making decisions on patients without involving them)
- So, ReSPECT encourages us, health professionals, to INVOLVE the patient – it is there life after all. And to involve them EARLY rather than late on when they might not be in a state to make decisions.
In practice, how does it translate?
- We should be presumptive in favour of patient involvement legally – i.e. just involve them in the decision making.
- Leaving someone “for CPR” when they may not want it is no less a breach of their human rights
- Where no explicit decision – there should be an initial presumption in favour of CPR
- But this DOES NOT mean the indiscriminate application of CPR that will be of no benefit and not in a person’s best interests.
Top tips in applying it
- Cover what treatment wanted AND what treatment not wanted
- Do it early – esp those end of life, at risk of cardiac arrest.
- Don’t just think the elderly. It’s for everyone, at any age.
- Remember, this is about EMERGENCY CARE & TREATMENT
- Once you have filled in the form…
- when to review?
- who keeps it?
- summarise the document verbally to the patient – i.e. what you have agreed, check understanding, make adjustments if needs be.
If in doubt, seek the opinion of your medical protection organisation and your local adult/child safeguarding team.
What if patient wants resus and as a clinician you feel it is futile
- Re-open the discussion – you need a deeper conversation.
- If you really think it is futile, and the patient still wants it, that usually means you have not explained the pros and cons well enough.
- Go back and do more discussion. This is not about you over-riding their decision, but both of you aligning your viewpoints and shared-decision making.
What if patient’s advocate wants it, and as a clinician you feel not in patient’s best interests
- Like above, re-open the discussion – you need a deeper conversation.
- If you really think it is futile, and the advocate or relative still wants it, that usually means you have not explained the pros and cons well enough.
- Go back and do more discussion.
- If you feel as a clinician you have done your best to get a conversation going and good explanations – and that it would be futile – but the relatives still wants it – then you may need to get a court order. Talk to your medical protection organisation first. It is VERY RARE to have to go down this route.
Does the patient’s/patient’s advocate decision override the doctors when they are at variance?
- No, it doesn’t. If you think it is futile and not in the patient’s best interests, then that is an important medical decision.
- HOWEVER, I cannot emphasise enough how you need to go back to having a discussion.
- You should not be autocratic or dictatorial when there is a variance of opinions. The variance signals the need for more discussion.
- Deeper and more meaningful discussions usually will help all parties get to the “right” decision.
ADRT
Advanced decision to refuse treatment. This is legally binding. Usually very items of very specific for example I do not want a ventilator for have breathing difficulty or I do not want nutritional support if I can feed myself nor do I want to peg tube
ADPW
Advanced decision for patient wishes. This is not legally binding but you would want to try and satisfy as far as possible as it is a patient wishes. Usually for very specific or general things. For example a wash wish to remain at home as for as long as possible.
What can families dictate?
- Families cannot dictate what they want for their loved one. What they can’t dictate is what they think their loved one would have wanted. It is about what the loved one wants not what the family wants.
- If you are in a 50-50 position of whether to offer CPR, you can use family to help make that decision. So family can help make the decision to opt a treatment in when there is a choice. However, if you are in a position where you think CPR is going to be futile and not worth trying, then the family cannot force you into doing what you don’t want to do.
- In other words, a family can help make the decision which of several treatment options to use for their loved one. But they cannot make the decision to opt a treatment in when there is no choice.
What about the patient who wants CPR even if it is futile
Don’t fight with the patient. That relationship is incredibly important. If a patient wants it despite having a really good discussion about it, allow CPR to proceed. You can always revisit it later and patients often change their minds when their situation becomes worse. Don’t get too hung up about it.