Looking After People With Cancer

Related articles include:

• Palliative care (dying at home)
• Pain control in terminal care
• Carcinomatosis
• Dyspnoea in palliative care
• Controlled drugs
• Radiotherapy
• Syringe drivers

Cancer scares people more than almost any other disease. There are many misconceptions but much fear is justified. Being a doctor is not simply about curing diseases but looking after the whole person. The disease may be curable but the path tortuous with much unpleasant investigation and treatment on the way. Terminal care, if it is required, is not a failure. All of us must die of something one day. The way that it is managed is most taxing to the skills of the whole team and it can be most rewarding.

30 or 40 years ago doctors would be reluctant to admit to a patient that he had cancer, even when the diagnosis was plainly obvious to all. They would tell the family but not the patient. Nowadays ethics dictate that the patient must know and it is up to him if he wants others informed. Patients would connive at this deception, even viewing radiotherapy as some form of physiotherapy. We are much more open and honest with our patients and today this is needed to gain trust. Medicine is full of uncertainties and we must help the patient to cope with those uncertainties. Be kind and compassionate. Never forget that you are dealing with a person.

Another matter that has changed considerably is the extent of working as a team. This team may involve those in secondary care including physicians, surgeons, oncologists, pain clinics and clinical psychologists. The primary care team may involve district nurses, MacMillan nurses and social care. The local unscheduled care service may also need to be aware of those whose terminal care may require attention or where death is expected.

Patients are often aware that cancer is a possibility and if tests are being performed for this they are reassured that the possibility is being checked rather than unduly worried about what might be a false alarm. Everyone knows that the prognosis is better for tumours caught early although there is still a degree of denial when some people refuse to present until the disease is very advanced.

Breaking bad news requires consummate skill. It is something that a very junior doctor is sometimes required to do and so the necessary training must be part of the undergraduate curriculum.¹ Never give such a diagnosis over the telephone. Invite the patient to attend the surgery and give the option of bringing a companion. In hospital outpatient departments similar principles apply but for inpatients try not to do it on an open ward. Take the patient to a side room and be assured of time and lack of interruptions. There are many different strategies for breaking bad news and they are reviewed elsewhere.²

Give time. Be aware how emotionally traumatic this is. Ascertain that a box of tissues is at hand. Be prepared to offer further appointments to discuss more or to give further clarification. If the prognosis is poor the patient may wish to discuss terminal care. Be justifiably reassuring about the control of pain as this is much feared. They may have places they wish to go or people they want to see before it gets too late. Many people die intestate and the diagnosis may be a spur to making a will. This almost invariably makes management of the estate much easier after death and assures compliance with wishes. Some people also make advance directives, also called "living wills", to outline how they wish to be managed should they become incompetent. The matter is discussed in detail in the article. They are not allowed to request active euthanasia.

Such devastating news may have a profound impact not just on the patient but family and those close. There may be guilt at a causative life-style such as smoking but looking for someone else to blame is more common. They may blame you or another practitioner for failing to diagnose it earlier. They may find totally irrational scapegoats such as mobile telephone masts or local factories. They may turn to religion or even blame God. Be patient. Be sympathetic but explain irrationality.

Discusing Prognosis

Perhaps the most important question for the patient is prognosis. With histological type and staging it should be possible to give a survival rate but these figures are more available to specialists than in general practice and they may be the figures for that unit. Nevertheless the person may still wish to discuss the matter further with the GP. Find what they know and help them to understand the figures. Most people have very little idea of risk and odds and a sizable number do not even understand percentages. Help them make sense of figures. A 10% survival rate is not a certain death sentence but only 1 in 10 will survive. Similarly an 80% survival rate is not a certainty of cure. 1 person in 5 will still die. For some cancers such as carcinoma of colon, survival at 5 years can be taken as a cure but for others, most notably breast cancer, late recurrence is a real possibility. Patients and family may ask about prognosis in terms of, "How long has he got to go?" Avoid being more than vague as you will always be wrong. To relatives, 6 weeks does not mean 5 or 7 and patients will always surprise us by lasting longer or going faster than we anticipated.

Whilst it is necessary to be honest it is also necessary to give a ray of hope. We all need something to cling to.³ The prognosis for most forms of cancer has improved quite significantly over the years. A notable exception is lung cancer although we have known how to prevent most of it for over 40 years.

There may be a number of options for treatment and this should be discussed with the patient. They may need to know about side-effects of chemotherapy. Hair loss can be particularly distressing to women and early referral for a wig will help self-esteem. The specialist service will discuss such matters as the relative merits of surgery, chemotherapy or radiotherapy if necessary to help the patient make an informed choice. If a person were presented with such a choice 20 years ago he would have replied, "You're the doctor. You tell me," but today the patient, with appropriate counselling and explanation, is pivotal to the decision-making process.⁴ Involving the patient in making decisions is not just part of the early treatment planning but should extend through all stages of the condition.⁵

Treatment of cancer is not always aimed at a cure. Sometimes it is just palliative, reducing tumour bulk, bypassing obstruction or aimed at pain relief. Both radiotherapy and chemotherapy may make the patient feel very unwell and nausea and vomiting are a great problem. Usually simple antiemetics such as metoclopramide, domperidone, prochlorperazine or cyclizine will suffice but sometimes oncologists use newer and more expensive preparations. Steroids are sometimes valuable and there has recently been much interest in the value of cannabinoids in terminal care and other fields.⁶ Nabilone is licensed for use under close observation, preferably in hospital setting. Not only is nausea and vomiting very unpleasant but it undermines nutrition and hydration. Certain drugs, especially cisplatinum are particularly noted for this. Cyclophosphamide is renowned for hair loss and the patient must drink plenty to prevent chemical cystitis. Opportunistic infection such as oral candida may require treatment. Antiseptic mouthwashes can reduce stomatitis.

• Pain is frequently a problem and often what patients fear most. The hospice movement did much to lay the foundations of rational and effective control of pain. In the early stages it may be possible to gain adequate control with simple measures such as NSAIDs or paracetamol but do not be reluctant to move on. The Oxford Pain site gives a "league table" of analgesic potency⁷ although this is for acute rather than chronic pain. Co-codamol 8/500 has little benefit if any over plain paracetamol. Co-codamol 30/500 is significantly more potent but the dose of codeine is much greater and with it related side-effects. Keep to oral preparations as much as possible. Sometimes both doctors and patients are reluctant to use adequate amounts for fear of tolerance and addiction. Addiction is not a problem in terminal care. Furthermore, if something is done that relieves severe pain so that large doses of opiates are no longer required the amount can be rapidly reduced with little or no trouble. Certainly it is in no way comparable with the syndrome faced by a drug addict when opiates are withdrawn.
• Analgesics should be taken on a regular basis so that pain does not become severe. With this regime it is often possible to gain control with comparatively modest levels of medication. If pain is allowed to become severe, more potent analgesia is required to overcome it so that the patient spends half the time distressed by pain and half the time sedated by potent analgesia. Long acting preparations are preferable as they tend to give more constant blood levels and they are less likely to wear off during sleep. If pain breaks through or a painful procedure such as change of dressings or a bed bath is anticipated, a single dose of stronger analgesic is required to overcome the pain. An injection of pethidine will help but oral medication may suffice.
• When opiates are initiated a suitable starting dose is morphine, modified release, 20mg twice daily. A lower dose is unlikely to be as effective as the analgesic that it replaces. A higher dose may be excessive and dangerous. The dose can be titrated to give adequate pain relief without undue sedation. Tachyphylaxis occurs. This means that it is necessary to increase the dose as time goes by and the patient builds a tolerance so that the necessary required daily dose may be well in excess of what would be a fatal overdose to an intolerant person. The case of Harold Shipman has made some doctors reluctant to use adequate doses but this is to be depreciated. Especially as death approaches, the doctor should not fear giving adequate doses. There is no good evidence that this hastens death⁸ and the concern must be for death with dignity.
• Nausea may require additional therapy. Constipation is very common. Opiates, including codeine-based drugs inhibit peristalsis and along with a poor diet and inactivity the resulting constipation can be severe. Bulking and softening agents are useful but as the main underlying process is inhibition of peristalsis it makes sense to give stimulants of peristalsis, even if they tend to be avoided in other circumstances. Otherwise the bowel contents may be soft, bulky and merely static.
• Opiates are useful not just as analgesics but also to relieve distress. They also have an anti-tussive effect that is very helpful in lung cancer. Hyoscine may help relieve spasm in gastro-intestinal cancers and the pain of stomach cancer can be helped by acid suppression, usually with a PPI.
• Oral medication should be used as much as possible but the time will probably come where, for various reasons, they no longer suffice but there are a number of other possibilities. When converting from one drug to another or when moving from one form of administration to another it is essential to give an equivalent dose. Figures for conversion can be found in the BNF.
• Fentynyl patches are very effective and come in a variety of strengths but they are quite expensive. Another alternative is an infusion pump that gives a slow subcutaneous injection via a syringe driver. The syringe usually lasts 24 hours. Some doctors prefer morphine and others diamorphine. The latter is more soluble, possibly has a better effect on curbing anxiety and may also have a more potent anti-tussive action. It is possible to put other drugs into the syringe too but before doing so check that they are compatible. An anti-emetic is commonly employed and possibly a sedative too. Chlorpromazine is antiemetic, it eases anxiety and it enhanced the effect of opiate analgesics.
• If tumour infiltrates nerves the pain can be very severe. Anticonvulsants such as gabapentine and pregabalin are often helpful. Amitriptyline is also beneficial in severe pain, especially with anxiety.
• If pain continues to be a problem, especially with the invasion of nerve roots, the help of a pain clinic should be sought.

There has not been a great deal of research in assessing where patients would prefer to die but what is available suggests that most would wish to die at home.⁹ Dying at home requires adequate backup and resources. Nowadays less people are admitted to an acute hospital bed for terminal care but they may need to be in a care home or a hospice. The preference for hospice care over death at home may be greater than is usually thought.¹⁰

Although death comes to us all, it comes in different ways, depending in large part upon culture and belief.¹¹ It is essential to be sensitive to these matters. Spend time talking to your patient.

The general practitioner is involved with the patient with cancer from initial presentation possibly through to death. That is not to suggest that death is inevitable as nowadays much can be cured. Nevertheless the experience of having had the diagnosis will be a major event in the patient's life.

Communication is imperative. Look at all aspects of the patient's wellbeing, including emotional needs. If it comes to terminal care a conscientious and confident approach is required. Remember that it is also a very important time for those around the patient and as a family doctor you are really caring for the whole family. After death it is valuable to offer the bereaved an appointment with yourself, or their doctor if they do not usually consult you, to assess their response and give an opportunity to discuss feelings. As it tends to be hectic up to the funeral and only after that does the loneliness strike, it is usually best to defer such an appointment until then.

When an old person dies we say that, "They had a good innings", or if death was traumatic that "It was a merciful release" but the emotional effect of caring for a young person or a child who is dying of cancer is very strong. No one can fail to be touched by such an experience.

The new GP contract contains a section in the Qualities and Outcomes Framework (QOF) about the care of patients with cancer. There are just 2 criteria:

• The practice can produce a register of all cancer patients defined as a "register of patients with a diagnosis of cancer excluding non-melanotic skin cancers from 1 April 2003"
• The percentage of patients with cancer diagnosed from 1 April 2003 with a review by the practice, recorded within six months of confirmed diagnosis. This should include an assessment of support needs, if any, and a review of co-ordination arrangements with secondary care.

These are each worth 6 points. The second criterion has a minimum threshold of 25% and a maximum of 90%. The practice may choose to do more. For example, they could review the records of all those diagnosed with cancer and ask if there were any pointers that may have led to the diagnosis being made earlier. They may also look at terminal are and ask how good was the quality of care.