Palliative Care and Pain Management
There is always something we can do
- We cannot cure the incurable,
but we can control many of the
symptoms which cause them distress.
- We cannot take away the pain of loss,
but we can stand with those who are
grieving and share their sadness.
- We do not have all the answers,
but we can listen to all the questions.
The holistic approach looks at
the problems in four groups;
- Physical – symptoms (complaints) such
as pain, cough, tiredness, fever
- Psychological – worries, fears, sadness,
- Social – needs of the family, issues of
food, work, housing and relationships
- Spiritual – questions of the meaning of
life and death, the need to be at peace
makes the patient feel valued.
- Avoid medical terms that the patient
may not understand
- Give information rather than advice –
then they can decide for themselves
what to do next
- Only give accurate information. It is
all right to say you do not know.
- It is good to check the patient has
understood you. If you have given
instructions, ask them to say back to
you what they are going to do. See if
they have any more questions for you.
Faced with a life limiting illness a person can feel hopeless and frightened. Unfortunately this kind of diagnosis can also leave the health care worker feeling anxious and uncertain as they cannot offer a cure and wonder if there is anything else to be done. In palliative care we change the focus to ‘care beyond cure’. We no longer say ‘there is nothing we can do’ but rather ‘there is always something we can do’ but we need to do this together.
Much of this brief summary is taken with permission from the Palliative Care Toolkit which emphasizes this ‘can do’ approach.
Palliative care is about people rather than diseases and seeks to address the problems which are of most concern to the patient. It sees the patient as a whole person in his family and community context and focuses on what will add quality to his life.
We talk about ‘putting life into their days, not just days into their life‘
You can talk about difficult issues
Listening to patients is as important as talking. It not only helps us to get information, it makes people feel valued when we listen to their story. Being able to voice the questions and worries that are troubling them can bring great relief and take away some of the isolation and fear they may be feeling.
One of the challenges is how much should we say; especially if there is bad news to break to patients and families.
“Truth is one of the most powerful medicines available to us, but we still need to develop a proper understanding of the right timing and dosage for each patient.”
Why is it important to tell the truth?
- To maintain a relationship of trust. Lying destroys trust
- To reduce uncertainty. People usually cope better with truth than uncertainty, even if the truth is painful.
- To prevent unrealistic hope. Sometimes people spend much time and money going from clinic to clinic looking for treatment because no one has been brave enough to tell them that there is no cure for their illness.
- To give opportunity for mending difficult relationships or exploring spiritual issues.
- To allow patients and families to prepare for the future – this might involve writing a will, or travelling to the family home, or planning a funeral, or many other things which they want to do before they die, and which may not be done if they do not hear the truth.
Breaking Bad News
Nobody finds this easy. Telling someone that they have cancer, or HIV, or that there is no cure for their illness, can be devastating and we don’t like causing pain. We may feel we won’t know how to handle their reaction. However this is a skill we can learn. The following are general guidelines that follow the letters of BREAK NEWS.
Be prepared; Make sure you have read or heard all the information that is available about the patient you are about to talk with. Make sure you have enough time – do not start to break bad news when you only have a few minutes. Try to prevent interruptions; if you have a phone, turn it off.
Relatives; It is usually best to give bad news when the patient has a close family member with them for support, and to share the information – most people only remember a small part of what has been said. However it is important to check first with the patient and the family.
Expectations; What is the patient expecting to hear? Find out what the patient already knows. This is very important even if it seems obvious to us, or even if we know they have already been told something by someone else. What has been said and what has been heard are not always the same. Listening to their thoughts will tell us what level of understanding they have, and what sort of language they use to talk about their illness.
Assess what is appropriate; Try to assess how much they would like to know. It is not right to force information on someone who is not ready to hear, just as it is not right to withhold information from someone who does want to know. We don’t have to say everything in one visit; they may be ready to hear more next time.
Knowledge; Share the knowledge you have slowly and gently, being careful to avoid words they won’t understand. It is often helpful to let the patient know you are about to tell them something important – you can give a warning such as “We need to sit down and talk, things are quite serious.” As you talk, give them time to absorb what you are saying and at the end, check they have understood.
Never “nothing we can do”; It is important to give positives as well as negatives; “We cannot cure the cancer, but we have medicine that will stop the pain.” “We are always here to help if new problems arise.”
Empathise; We may find it hard to allow their feelings to come out, because we want to take away their sadness, or we are alarmed by their anger or despair. We cannot remove their feelings, but we can empathise – this means trying to understand how they feel, “putting yourself in their shoes.”
What next; It is important to talk about what will happen next and how you can help. Fix a time when you will see them again. Make sure they know you will not give up on them and let them know how they can get help if problems arise before they see you next.
You can control pain and other symptoms
Pain relief and symptom control are vitally important. Without pain and symptom management, we may give excellent psychosocial support but we will not be providing palliative care. The key principles are;
- Careful assessment
- Treat what is treatable
- Care for the patient
- Prescribe palliative care medications
After applying these principles you need to review and adjust as necessary and ensure good explanation using your listening skills.
Let us look at pain management and apply these principles.
Over 70% of people with advanced cancer or HIV disease experience pain along with many other chronic illnesses.
Assessment of pain
It is important to ask about pain in every patient. A person who has had pain a long time may not show the usual signs of being in pain (facial expression, sweating, pale with fast pulse). They may just be quiet or depressed. Careful assessment of pain is essential.
- How many different pains are there? It is useful to record them on a body map and ask about each one.
- Where is the pain and what does it feel like?
- How severe is the pain?
- How long has the pain been there?
- What makes it better or worse?
- Has any medication helped?
- Does the pain get worse with movement?
- Are there any changes in feeling of the skin at the site of pain?
Use a tool to measure severity such as the scale below.
By the mouth – giving analgesics by mouth is the simplest and most reliable method for most patients. If the patient cannot take tablets by mouth, then the subcutaneous, rectal, and buccal routes are alternatives.
By the clock – constant pain needs regular analgesics to keep it away. Pain that is allowed to build up is more difficult to control. Do not wait for the pain to return but give analgesics at regular intervals according to their duration of action.
By the ladder – the WHO analgesic ladder gives a logical way of increasing the strength of analgesia in steps as pain increases (see below)
By the individual – tailor treatment for the holistic needs of the individual and remember to review, review, review.
Non-opioids (all Steps of the ladder)
Useful analgesics at all severities of pain. NSAID’s have a particular role in inflammatory pains such as soft tissue infiltration and bone metastases
Paracetamol 500-1000mg q6h
Non-steroidal anti-inflammatory drugs eg diclofenac 50mg q8h
The division is somewhat arbitrary as all opioids have a similar mechanism of action but differing efficacy.
Weak (Step2 of the ladder)
- dextropopoxyphene comes in combination with paracetamol (Proxyvon). A therapeutic dose is usually 2 tabs q6h though some patients may have relief at 1 tabq6h
- tramadol has both a weak opioid action and also has additional effects via re-uptake of 5HT and nor adrenaline. It is a useful analgesic and comes in oral and parenteral formulations. However, it is also more costly. A therapeutic dose is usually 50-100mg q6h
Strong (Step 3 of the ladder)
Morphine is the gold standard strong opioid. Sadly many centers do not have ready access to oral, affordable forms of morphine. The correct dose should be carefully titrated against the pain and balanced with any adverse effects. Side effects are often predictable and should be anticipated and managed. The starting dose is typically 5mg q4h with extra or ‘breakthrough’ doses of 5mg given in between the regular doses. Incremental increases of approximately 30-50% can be titrated against effect.
Adjuvant analgesics (all Steps of the ladder)
This miscellaneous group of medications have been shown to help relieve pain in specific circumstances. We will focus briefly on each major group. It is important to establish a relatively straightforward scheme for the use of adjuvants.
- amitriptylline 10-50mg o.d., imipramine 10-50mg o.d.
- useful for neuropathic pain, low dose effective
- eg burning, shooting pains with altered sensation
- sodium valproate 200mg t.i.d or clonazepam 0.5-2mg od
- useful for neuropathic pain,
- eg burning, shooting pains with altered sensation
- diazepam 2-10mg divided doses, baclofen 5mg t.i.d
- useful for skeletal muscle spasm / cramps
- eg nerve root compression with muscle spasm, rectal tenesmus
- dexamethasone 4-16mg daily
- useful for imfammation or oedama associated with compression, always give 3-5 day course and review effect, care to avoid long term use
- eg nerve compression, raised intracranial pressure, hepatic capsule stretch
- hyoscine butylbromide 20-40mg stat and as required
- useful for smooth muscle spasm
- eg intestinal colic, visceral distension pain
Managing side effects
Anticipating and managing side effects is the responsibility of the prescriber. Many patients with palliative care needs are already on several medications and may also have a degree of organ failure. It is important not to add to the burden of morbidity with unnecessary side effects. As most of the drugs used will be familiar we will concentrate on opiate side effects.
Experienced by nearly all patients, tolerance does not develop. Untreated the symptoms can even become worse than the original pain. Laxatives should always be prescribed and particular care taken when oral intake is poor. Patients and families often believe they do not need to have regular bowel movements when they are eating little. Start with a stimulant laxative and advise a good oral intake of fluids. Add a softener and consider rectal measures of no relief after 3 days.
- bisacodyl 10mg o.d and titrate to t.i.d
- add cremaffin 15-30mls o.d-t.i.d
- rectal measures include; bisacodyl suppository, high glycerine enema, digital evacuation
Common for a third of patients starting morphine or having a significant dose increase. Tolerance develops in a few days but it is important to treat prophylactically for the first 3-4 days. Patients will experience a severe, unrelenting nausea which will not be relieved by vomiting. Opiates stimulate central chemoreceptors so a centrally acting anti-emetic is needed.
- haloperidol 1-5mg o.d is best
- metoclopromide 10mg q.i.d may be sufficient
Common when starting or increasing the dose, tolerance usually develops in a few days. It is important to explain this to families and encourage them to persevere with the prescription.
Confusion and delirium can occur and may respond to a dose reduction. If the pain does not allow a reduction then start adjuvants, consider other approaches for managing the pain and use haloperidol 1.5-2.5mg oral to control the delirium. Patients may complain of vivid nightmares before developing delirium.
Myoclonus is a very helpful sign of toxicity and be often be detected early. The morphine dose should be reviewed and titrated to a lower level. It may also be due to deteriorating renal function, therefore the dose needs to be given less frequently.
Myths of morphine
Sometimes this is termed ‘opiophobia’ and encompasses the belief held by doctors, nurses and patients that are not based on fact. These myths can cause great reluctance in the appropriate use of morphine. Common misconceptions are listed below.
Q Morphine causes respiratory depression
A When used orally and titrated against pain there is no respiratory depression
Q Morphine makes people into addicts
A Some patients have a tendency to psychological dependence but giving oral morphine for pain does not cause this to happen. There will be a physical dependence that means doses should be titrated and withdrawn slowly.
Q Morphine should be kept for dying cancer patients
A Good pain control is essential whatever the stage of disease. It will help quality of life and may even prolong life.
Dr Mhoira Leng FRCP
First section adapted with permission from the Palliative Care Toolkit; improving the care from the roots up in resource-limited settings. Dr Vicky Lavy, Dr Charlie Bond and Ruth Wooldridge. Copies can be downloaded along with a Training Manual from the Help the Hospices website www.helpthehospices.org.uk or the Open University labspace via the Palliative Care Partnership unit at http://labspace.open.ac.uk/ . The Toolkit has been used as an educational tool in many parts of India including a successful course in Lucknow in 2010.