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A grandmother with advanced breast cancer is receiving palliative care at home. During the last week her pain has got worse and she says that the oral morphine is not helping. She also complains of constipation.
A 44 year old woman was diagnosed with cancer of the right breast 4 years ago. She had a lumpectomy followed by radiation but the cancer has come back and she now has an offensive, fungating wound.
A patient has breast cancer which has spread to her lungs. She is not suitable for any more chemotherapy or radiation and is referred for palliative care to a local hospice. On admission she is noted to have a large bedsore. She is weak, extremely thin and has not been able to work for the past 8 months. Her husband is not coping and seems to be staying away more. Her daughter of 16 years of age has given up school to look after her mother and cries a lot.
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with a life-threatening illness, through the prevention and relief of suffering by means of early identification, assessment and treatment of pain and other physical, psychosocial and spiritual problems.
The purpose of palliative care is to:
Enhancing the quality of life may also positively influence the course of illness. Palliative care does not aim to hasten or postpone death but rather to improve the quality of life.
Palliative care aims to improve the quality of life in patients facing a life-threatening illness.
Palliative care should start as soon as the diagnosis is made that this is an illness which is life-threatening and probably cannot be cured.
Palliative care should start as soon as the diagnosis of an incurable life-threatening illness is made.
Terminal or end-of-life care addresses the needs of the patient and family when you think the patient is dying. Terminal care is the last phase of palliative care and is usually given during the last weeks or days of life.
This is active care with the emphasis on symptom management, comfort and dignity. The aim is not to prolong life but to help achieve a ‘good death’.
The aim of terminal care is to provide symptom management, comfort and dignity during the dying process.
A terminal illness is an illness which cannot be cured and is expected to result in the death of the patient. However, it does not necessarily mean that the patient is expected to die in the next few weeks. Most patients with a terminal illness need palliative care until the time comes when the patient is nearing death and terminal care is needed.
The most important step is to establish a relationship with the patient and their family. It is important to develop a trusting relationship between the patient, the family and nurse/care team.
The first step in palliative care is winning the patient’s trust.
Remember always that you are privileged to have been invited into the patient’s space at such a vulnerable time in their lives. They are searching for a friend who is neutral, won’t take sides, and who will listen to them without judgement.
Wherever possible, take the opportunity to see the patient in their familiar surroundings. This may not be possible if you are not able to leave the clinic. If you can visit the patient at home, on entering the premises, smile warmly, tell them who you are and what you do, and, if appropriate shake their hand while looking at them and let this opportunity to touch them linger a little longer than a normal handshake. This tells them that you are not in a hurry and that you care.
Ask the patient if you may sit down and where they would be comfortable for you to sit. Sit close enough (as a friend would) but not so close that the patient feels threatened. Sitting behind a desk or at a table creates a barrier between you and the patient and all barriers must be avoided. Ask that the television and radio be turned off.
Try and break the ice. You can pick out a picture, e.g. a wedding photograph of a child or a certain person or group gathering and ask the patient to tell you about the picture. Or you may comment on something that you find beautiful, a plant, table cloth or piece of furniture to talk about.
It sometimes helps to use the letters SOLER to make sure that you are in a good position to listen to your patients:
S: Face your patient Squarely. This shows that you are interested in what they are saying and want to hear their story.
O: Adopt an Open posture. Don’t cross your arms or legs. Sit comfortably with both feet on the floor, relax your shoulder and put your hands on your knees.
L: Lean slightly toward your patient. This tells them that you are listening intently.
E: Eye contact. Make good eye contact but don’t stare.
R: Relax and be yourself.
Above the waist only! This avoids miscommunication. Touch is wonderful and comforting but you must be sensitive to the reaction of the person being touched. If they seem comfortable continue but if the patient seems uncomfortable stop.
A useful guide is:
Examining the patient will give you a lot of extra information and should ideally be done at the time of the initial assessment. However, if the patient is extremely tired, nauseous, in severe pain or distressed, it might not be appropriate on the first visit. Always ask the patient if they are happy for you to examine them before doing so. This rule applies at all times. If the patient has a fungating wound, it may take a few visits before they are prepared to show you the wound. The most important priority of the first visit is to establish a trusting relationship. Once you are able to make an initial assessment, you should write a list of the problems experienced by the patient and the family and this must be updated regularly. Each problem will need to be addressed.
Most patients with a progressive illness such as advanced breast cancer will suffer pain at some stage. It is very important to recognise when a patient is in pain, to assess the severity of the pain and to decide on the best management of the pain. Patients often fear pain more than any other symptom.
Good pain management is extremely important.
Most patients will be able to talk about their pain and describe the site, nature and degree of pain. However, other patients may not be fully conscious and unable to complain of pain. In these patients facial expression and ‘body language’ must be used to assess pain.
Always first check that the patient is taking their pain medication correctly and then obtain more details about the pain. The use of PQRSSTT might help:
P: What provokes (causes or precipitates) the pain?
Q: Quality (type or nature) of pain, e.g. burning, sharp, stabbing, dull ache, colicky or tingling?
R: Does the pain radiate anywhere else in the body?
S: Site – where is the pain?
S: Severity – how bad is the pain on a scale of 0 (no pain) to 10 (severe pain)?
T: Timing – when is the pain particularly bad?
T: Treatment – what is the patient taking and does it help?
This is important information required to decide on the correct pain management.
It is important to obtain a clear description of the pain.
If possible pain medication should be given by mouth. It must be given regularly and according to a strict schedule, i.e. every 4 to 6 hours. It is important to prevent or reduce pain rather than only treat pain when it is already present.
Pain medication must be given regularly using a strict schedule.
Useful pain medication (analgesics) include:
Paracetamol is a safe and effective medication for mild to moderate pain. Paracetamol is given by mouth and comes in 500 mg capsules or tablets. The dose is usually 1 g every 4 to 6 hours. A common mistake is to give too low a dose and not to give the medication frequently enough.
Paracetamol 1 g every 4 hours is very useful in managing mild to moderate pain.
Diclofenac (Voltaren) and ibuprofen (Brufen) are anti-inflammatory drugs (NSAIDs or non-steroidal anti-inflammatory drugs) which are safe and useful in the management of mild and moderate pain.
The oral dose of Diclofenac (Voltaren) varies depending on how severe the pain is. It comes in 25 mg and 50 mg tablets. The usual dose is 25 or 50 mg given 3 times a day.
Ibuprofen (Brufen) comes in either 200 mg or 400 mg tablets. The usual dose is 200 to 400 mg given 3 times a day.
Either of these medications can be used together with paracetamol to have an added effect.
Trepiline is used to relieve neuropathic (nerve) pain. Trepiline is a complex drug and has different effects with different doses. It acts as a pain medication by blocking pain impulses to the brain. The dose is 10 or 25 mg taken once a day. In higher doses, (75–150 mg) it can help improve sleeping. Therefore it is best to take the dose before going to sleep at night.
Morphine is extremely useful to manage severe pain, especially soft tissue pain. It must be given every 4 hours as the duration of action is short. It should be used if the patient still has pain even though they are taking 2 analgesics, such as paracetamol and ibuprofen, in the correct dose at the correct frequency. Always shake the bottle of morphine to mix it well before giving a dose.
Oral morphine should be taken every 4 hours.
The dose of morphine is ‘titrated’ against the patient’s pain level. If morphine has been prescribed for the patient, it is important to review the patient’s response to the drug regularly. ‘Breakthrough’ pain, i.e. pain in between regular 4-hourly doses of oral morphine, indicates that the dose is too small. In the ward the dose of morphine can be increased every 4 hours while in the home this can be calculated every 24 hours and can be done telephonically.
The amount of extra morphine needed in a 24-hour period can be used to calculate the correct regular dose.
If the patient has problems swallowing the tablets or capsules, liquid medication can be prescribed. Morphine is frequently given in a liquid form. If the patient is unable to swallow at all, continuous subcutaneous morphine can be given with a syringe driver.
Yes. Many patients needing palliative care have discomfort without necessarily having pain.
There are many different causes of discomfort such as position, constipation or a full bladder. It is important to always ask about comfort and attempt to make patients more comfortable. Keeping patients comfortable is an essential part of good palliative care.
Unfortunately open wounds are seen in patients with advanced breast cancer, especially when patients present very late in the disease. Radiotherapy can help to reduce the size of a fungating wound and is also helpful in controlling bleeding from wounds.
It is important not to show shock or horror at an open (fungating) wound even if there are maggots in it. The wound may be very smelly. If you can smell it, the patient will also be able to and will be ashamed.
The site and size of the wound should be noted. Ask the patient what bothers them most about the wound. Ask about bleeding, exudate and pain.
The odour can be reduced by good hygiene, regular dressing changes and adequate disposal of soiled dressings (sealed in plastic bag, burnt or buried). Ventilation should be improved with open windows and doors. Pleasant smells (e.g. vanilla, lemon, lavender) can be introduced by burning candles or incense. A bunch of picked lavender will help. Lavender oil on the outer dressings helps.
Oral antibiotics can help control any infection that may be present in the wound, and reduce the smell. Applying antibiotic gels directly onto the wound can also help. There are also particular dressings to control an unpleasant smell such as charcoal dressing to filter odour.
Absorbent dressings assist with leakage and discharge from wounds. Baby nappies are useful to soak up the exudate while you wait for the infection to improve and the wound to dry. Glycerin and ichthyol on gauze is helpful in wet areas of the wound when exudate is a problem. The area needs to be well covered to stop the mixture staining the linen.
Support must be given for patient and family. Always reassure the patient.
The wound needs to be cleaned regularly (at least once a day) to remove bacteria and dead (necrotic) tissue. Gentle irrigation (washing) with saline (salt water) is effective. Metronidazole (Flagyl) tablets can be used to make a ‘Flagyl Solution’ with which to clean the wound. Mix 2 litres of saline with 13 crushed Flagyl tablets. Crushed metronidazole (Flagyl) tablets can then be sprinkled over the wound when applying the dressing. Once the wound is clean and healing well the dressing can be left in place for two to three days. Use warm saline to soak the old dressing before removing it so as not to cause bleeding and pain when changing the dressing.
Bedsores are pressure ulcers of the skin and underlying tissue. They usually occur over boney parts of the body in patients who are chronically ill and bedridden.
Bedsores (or pressure sores) are important because they are painful and can become infected causing deep wounds that are difficult to heal. They usually can and must be avoided at all times and are a result of poor nursing. Palliative care patients should not have to suffer further because of a preventable problem such as bed sores.
Every effort must be made to prevent bedsores.
Bedsores are caused by pressure on one area of skin for too long. Continual external pressure for periods more than 1 to 2 hours greater reduces the blood flow to that area of the skin causing bed sores. They are more likely to form if there is dampness due to urine, faeces and sweat which makes the skin soft, cold and unhealthy and more likely to break down.
Patients who are overweight are more susceptible because of the weight on the pressure area while very thin patients may also get them because they have little tissue covering their pressure areas. All elderly patients, whose circulation is poor, are at risk.
Injury to the skin may also be caused by sharp nails or friction due to parts of the body either rubbing together or against the bed linen, e.g. restless patients.
Bedbound patients must be turned at least every 2 hours. The skin must be kept clean and dry by regular washing particularly in incontinent patients.
All pressure areas must be massaged whenever their position is changed. Superficial, quick massages cause friction to the skin. Rather a deep slower massage is preferable. Damp, soft skin can be hardened with surgical spirits while dry skins can be kept supple with oils and creams.
The bedding must be kept dry, smooth, free of creases or crumbs and the patient’s heels should be kept off the bed by placing a pillow underneath the lower leg. A ‘cradle’ helps to relieve the weight and pressure of heavy blankets. A sturdy box cut at one end to fit over the legs can be used. A piece of sheepskin under the area is helpful.
Film dressings may be applied to the vulnerable area to try and prevent breakdown of the skin.
Early bed sores usually heal with careful pressure management. The most important principle of treatment is to keep the patient off the pressure point where the bedsore occurs. A bedsore cannot heal if the patient’s weight is on the sore.
For more severe bedsores, it is important to remove damaged/dead tissue.
If possible, clean the wound with a saline (salt water) solution. (This may be painful.) Dry the wound. Dress the wound to keep it moist, to encourage healing, prevent infection and keep the surrounding skin dry to reduce the risk of damaging it. Antibiotic ointment or gel or crushed metronidazole (Flagyl) tablets are useful if the wound is infected.
Some bedsores will require the removal of any dead tissue which can be done without anaesthetic to ensure the minimal amount of live tissue is removed.
Pain management is important particularly before and after repositioning, debridement procedures and dressing changes.
Constipation is difficulty passing hard stools. Passing stools may also be painful or exhausting. Passing normally formed stools only every few days is not constipation.
Constipation is a very common problem in people with a long-standing illness. A careful history must be taken as patients often are shy about talking about their bowel habit. The stool should be checked for blood as passing hard stools can cause bleeding.
The four Fs:
Another important cause is medication, especially morphine.
Sometimes, there may be increased agitation due to constipation in confused patients. Constipation can cause agitation. Anxiety, distress and embarrassment may lead to not wanting to pass stool.
The patient should be encouraged to increase fluids such as water and fruit juice, as well as fresh fruit and vegetables. Honey, molasses, prunes and grated beetroot, dried fruits and marula jam are also useful. Give the patient advice about eating high-fibre foods and encourage them to add extra fibre to soups or porridge. These dietary changes can also be used to both prevent and manage constipation.
Where possible, encourage exercise. Unfortunately these measures are often not practical for palliative care patients whose appetite is poor, who may be experiencing nausea and anorexia and who may be too frail to undertake much exercise.
It is important to prevent and treat constipation.
When using laxatives, it is important to use a stool softener such as 15 ml of sorbitol liquid or 5 ml of lactulose (Duphalac) together with a bowel stimulant such as 2 tablets of Senokot.
Whenever possible, prevent constipation. If a patient has been constipated for some time, it may be difficult to manage the initial constipation and suppositories such as glycerin and bisacodyl (Dulcolax) or an olive oil retention enema may be required.
Morphine causes constipation and the combination stool softener and stimulant laxative should always be prescribed when using morphine unless there is concurrent diarrhoea.
They may have a primary physical cause such as asthma, bronchitis or emphysema. However, they may have secondaries from their cancer which can cause a pleural effusion (water on the lung), an airway obstruction (blockage) or infiltration of the lung tissue.
Chest infections, e.g. pneumonia, are more common due to the immobility of the patient.
Breathlessness may also be caused by emotional factors such as anxiety, fear, depression or anger. It is important to take a good history and decide whether there is an underlying physical cause. Breathlessness also causes anxiety and the resultant hyperventilation (breathing too fast) worsens the breathlessness. The cycle of anxiety and breathlessness can lead to a panic attack.
Make sure there is plenty of fresh air by opening windows. A fan may help as the sensation of a breeze on the face improves the feeling of getting enough air. Place the patient in Fowler’s or semi-Fowler’s position. Simple breathing exercises may help as may relaxation exercises. It may be necessary to adapt the patient’s activities of daily living so that there is less exertion.
Wherever possible, ensure that someone can reassure and stay with the patient while they are breathless. They can try and relax them by distracting them.
Some patients may benefit from a physiotherapist who can teach them breathing exercises which can stop them hyperventilating. Patients with a severe lung problem may need catheter oxygen. Nebulisation with saline can help for breathlessness while bronchodilators can be used if the patient is wheezing or if their ‘chest feels tight’.
Figure 8-1: Semi-Fowler’s position
It is important to assess the cause of breathlessness and to treat the cause such as pneumonia (with antibiotics), bronchospasm (with bronchodilators), pleural effusion (drain the effusion), cardiac failure (with diuretics).
The symptoms of shortness of breath can be treated with the following:
The medication used depends on the cause of the shortness of breath.
If a patient is stable on morphine and develops nausea, it is usually due to another cause.
The patient may become severely dehydrated.
Mouth care is important to prevent thrush.
It is important to provide the patient with anti-nausea medication (anti-emetics). Oral metoclopramide (Maxolon) 5 to 10 mg every 8 hours or cyclizine (Valoid) 50 mg tablets or 100 mg suppositories every 8 hours is helpful.
A sore mouth will cause problems with eating and talking.
These are emotional and community problems experienced by the patient and the whole family. The causes are many and may change during the duration of the illness.
It is important for health carers to understand what the patient’s belief system is. Gentle probing without being invasive is encouraged, simply asking if the patient has a faith or belief lets the patient know you are willing to discuss this with her. You can also ask how important their faith is and whether they belong to a faith community that is providing support at this difficult time. The patient should be offered spiritual counselling if needed and appropriate. It may be helpful to ask the family’s spiritual leader to be involved.
Many find it difficult to discuss sexuality but one needs to understand that sexuality does not necessarily mean sexual intercourse. Sexuality is the intimate relationship between two people and intimacy can mean just holding hands, an arm around one’s shoulder or a hug. It means ‘connecting’ with the person physically, mentally and emotionally. If a patient is not comfortable with sexual intercourse for whatever reason then there are other ways to satisfy one’s partner and these need to be discussed. A social worker can be called to counsel the couple.
These are all important and difficult issues that may need counselling from a social worker. Very often a nurse who has built up trust and a good relationship with the patient can help when the patient needs to talk about their fears and problems. Often there is no time to wait for a social worker to come so this is an opportunity for the nurse to encourage the patient to speak without the nurse feeling the need to talk. The nurse does not have to come up with all or any answers. It is perfectly acceptable for the nurse to be totally honest and say that she doesn’t know. Just being there is a great comfort. Just listen and just allow the patient or family member to talk about their problems. Patients will feel better and very often through talking to a concerned listener they come up with many answers to the things that have been worrying them just by being allowed to voice their concerns. Good two-way communication is vitally important.
Therefore a nurse can play a vital and central role in providing good palliative care by:
A grandmother with advanced breast cancer is receiving palliative care at home. During the last week her pain has got worse and she says that the oral morphine is not helping. She also complains of nausea and constipation.
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with a life-threatening illness rather than attempting to cure the illness. It addresses the prevention and relief of suffering by means of early identification, assessment and treatment of pain and other physical, psychosocial and spiritual problems. Palliative care should start as soon as a diagnosis of a fatal illness is made.
No. Terminal or end-of-life care is the final stage of palliative care which is provided when the patient is dying.
Often morphine is not given in adequate doses and not given frequently enough. Oral morphine should be given every 4 hours as the action of morphine does not last long.
The dose of morphine should be adequate to manage the pain level. If needed, ‘breakthrough’ doses of 50% of the regular 4-hourly dose may be given in between these regular doses. A strict record of how much extra morphine the patient was given during a 24 hour period must be kept. At the end of the 24 hour period the total number of milligrams that the patient received, i.e. the regular doses plus the breakthrough doses, is added together. This is now divided by 6 to give the new 4 hourly dose.
Constipation is a common complication of morphine management:
If these dietary changes do not solve the problem give laxatives such as Senokot 2 tablets to stimulate the colon and sorbitol 15 ml orally as a stool softener. Get the patient more mobile if possible.
A 44 year old woman was diagnosed with cancer of the right breast 4 years ago. She had a lumpectomy followed by radiation but the cancer has come back and she now has an offensive, fungating wound.
It is very important that you are caring and supportive and do not show horror at the sight and smell of her wound. Be confident and reassure her that local treatment will dry out the wound and prevent the smell.
It is important to clean the wound. Metronidazole (Flagyl) tablets can be used to make a ‘Flagyl Solution’ with which to clean the wound. Mix 2 litres of saline with 13 crushed Flagyl tablets. ‘Flagyl Powder’ or crushed tablets can then be sprinkled over the wound when a dry dressing is applied. If Flagyl is not available, clean the wound with saline (salt water).
Baby nappies are useful to soak up the exudates while you wait for the infection to improve and the wound to dry. Glycerin and ichthyol on gauze is helpful in wet areas of the wound when exudate is a problem. The area needs to be well covered to stop the mixture staining the linen.
Improve ventilation in the room by opening windows and doors. Introduce pleasant smells (e.g. vanilla, lemon, lavender) by burning candles or incense. Lavender oil of the outer dressings helps.
A patient has breast cancer which has spread to her lungs. She is not suitable for any more chemotherapy or radiation and is referred for palliative care at a local hospice. On admission she is noted to have a large bedsore. She is weak, extremely thin and has not been able to work for the past 8 months. Her husband is not coping and seems to be staying away more. Her daughter of 16 years of age has given up school to look after her mother and cries a lot.
The family of patients requiring palliative care have many stresses and problems and also need help and support. There are probably financial problems as she has not worked for many months. A social worker or experienced nurse should discuss the whole situation with him and help him face and manage the many social and emotional difficulties.
The daughter is not coping with the emotional and social problems of a mother who is slowly dying. She is probably depressed and also needs counselling and help. It is very important that the family is not forgotten when managing a woman with advanced breast cancer.