Chapter 9 DEATH AND DYING Terminal care About 65% of people die in hospital in the United Kingdom, and as the population’s mean age continues to increase, the total number will rise. Caring for dying people is stressful, particularly as a junior doctor. Evidence suggests that junior doctors come to terms with mortality at a much younger age than most people.
There are five elements to good end-of-life care: communication, pain control, symptom control, good prescribing knowledge and self-care. The last element is often forgotten but is as important as the others.
Communication Breaking bad news Breaking bad news is difficult but important. Contrary to popular opinion, people remember how bad news was given to them. Whilst every situation demands a unique approach, the following may be helpful:
If you are uncertain about how to start, talk to the patient’s nurse. It is generally a good idea to ask nurses what they think the patient knows before seeing the patient. Take a nurse with you to the bedside. If the patient would prefer, ask them to have family present. This will save you breaking the news twice and allow questions to be asked together. If possible, take the patient to a private room to tell them bad news. Have tissues handy. Hand your bleep to a colleague for at least 15–20 minutes. If you are unsure about how to proceed, it can be helpful to ask the patient ‘What do you know so far?’ Do not be afraid to give information. People almost always want more information than doctors give them. Watch and listen to the patient carefully for clues about how much information they want. It is acceptable to ask the patient ‘how much do you want to know?’ If the patient is shocked by the diagnosis, they may not take all the information at once, so you may need to repeat it either later in the conversation or at a later date.
Useful questions to assess how much someone wants to hear What have you been told? Are you the sort of person who wants to know exactly what’s going on? Would you like me to tell you the full details of the diagnosis/results/treatment options? How much do you want to know about what is going on? Do you want me to go on?
Tell the truth and answer questions directly when asked (the patient may have been waiting all week to talk to you). Be ready to answer questions accurately and to admit uncertainty. People are usually willing, even in the face of their own death, to cope with honest uncertainty. Have all investigations and findings to hand, and be ready to explain them to the patient. It is useful to take the medical notes in with you, so you can cross-refer as needed.Avoid using medical jargon. Write down relevant information to give to the patient, and consider drawing diagrams to explain what you are saying more clearly (about 60% of spoken information is lost). If it is a new diagnosis, patient information leaflets on the condition can be helpful in consolidating the information you have given them. Break down the information into chunks and ask the patient to repeat what you have explained to them if necessary. Ask the patient to write down questions they might have over the next few days. Give them your name or that of a colleague so that they can contact a doctor if they need to. Find out if the patient wants you to break the news to their relatives. If the patient’s relatives are present at the time then give them space to answer questions also, and ensure they have contact details for a member of your team also. Make sure the patient has given consent for you to discuss the details of the case with their relatives. Make an appointment if necessary with the senior members of the team at a later date. Write in the notes what you have told the patient. This saves embarrassment for the team and sets a baseline for future explanations. It is very important to communicate to the nurses what you have told the patient. They can follow up with further information and support. Consider other people who can help with breaking bad news: other doctors, nurses, chaplain or religious support worker (about 25% of families in the United Kingdom accept chaplaincy support), general practitioner (GP), nurse, police, social worker or support groups. The inpatient palliative care team is an excellent resource and is very helpful in a multitude of situations ranging from breaking bad news to symptom control. Ongoing communication with dying patients Pay a quick visit to the patient’s bedside the next day (or at night if you’re on call). Ask them how they’re feeling and if they have any questions. This will help put the patient at ease. Pain causes fear and anxiety, which may lead to the patient being withdrawn or aggressive. Often patients can be quite reticent about talking about pain or discomfort. Reassure them that pain can be controlled. There is no reason that your patients should be in pain (this is a common misconception for patients – particularly many stoic elderly patients who feel they should just ‘grin and bear it’). Dealing with pain is one of the most important contributions you can make to a dying patient. If someone’s English is poor, ask the nurses or switchboard to help you to book an interpreter. There is also a telephone interpreter service now widely available that can be used 24 hours a day. Be aware of functional symptoms, such as headaches and insomnia, which are best treated with reassurance, although it is important to make sure there are no real medical causes for the symptoms. A direct approach is usually the best one. A colleague once had a patient who had 22 symptoms in 24 hours. The patient had been told that she had metastatic cancer that week. The doctor asked her outright ‘How are you coping with the spread of your cancer?’ She burst into tears and told her she was terrified of dying. Maintaining continuity of care, despite ward staff changes, is especially important for dying patients. Tell patients and relatives that you are going home for the weekend or on holiday, when you will be back and the name of the doctor who will replace you. Elisabeth Kubler-Ross suggested five stages of dying in her 1969 book On Death and Dying . These were denial, anger, bargaining, depression and acceptance. Pitch your information and communication to wherever the person is today. Do not be surprised by dying patients’ aggressive or abnormal behaviour. This is when they need acceptance the most. Do your best not to take it personally – and check that there is no physical cause (e.g. pain, hypoxia, constipation, etc.). Managing dying patients is not easy; it is a difficult skill and you are unlikely to always say the right thing.Many dying people say that the most hurtful and distressing thing for them is avoidance and silence. Although it is often hard to do, allow patients to discuss dying with you openly. You may be the only person they feel able to talk to frankly.
Five questions to ask dying patients What have they most enjoyed in their life? Ask them to describe it to you. What would they like someone to hear that they have never said? What would they most like to say to people they love that they have never said? Ask them if there is any way they can communicate this (e.g. write a card, phone them from the ward, ask them to visit, relay a message). What are they most frightened of? You may be able to reassure them about pain and symptom control. Many patients can just be afraid of death. Listening to their fears can be equally therapeutic. What do patients need to do (in practical terms) before they die? Talk to support staff (nurses, Macmillan nurses, palliative care team members, social workers) and relatives about making this happen. These can include financial matters or writing wills. It is very difficult for people to do things from a hospital bed. Remember that some industrial diseases are eligible for financial support and that this is dated from the time of application, for example, Mesothelioma (call the Department for Work and Pensions Benefit Enquiry Line on 0800 822 200).
Look patients in the eye when you talk to them. Find out what their expectations are, and if they have any specific wishes about their death. Hint Breaking bad news is inherent to being a doctor. The importance of breaking bad news well is reflected by most medical schools in their curriculums. Regardless, it is a skill we can always improve upon. The BMJ has published several articles on this topic including a Learning Module ‘Breaking Bad News to Patients and Relatives’ that we would recommend completing.
Difficult situations Try turning difficult questions for you back to the patient. For example, you can ask them: ‘What makes you ask that question?’ Ultimately, honesty in the face of difficult questions is the best policy. Offer to ask a senior to come and answer questions you cannot (but it is usually unwise to guarantee they will come). Never lie or make up information; it is easy to lose the trust of your patient at this crucial time in the course of their illness. If family members make it clear to you that they don’t want the patient to know that they are going to die, ask your senior, palliative care team or nurses for help. The relatives are not your primary responsibility, although obviously you have to work with them. You can point out that it is your duty to inform patients of their condition unless it will cause them undue harm, this is rarely the case. It is often worth speaking to the relatives separately to find out why they do not want this information passed on to the patient. More often than not, situations can be resolved with good communication. If you disagree with the amount/content of information given to a patient by your seniors it is generally unwise to directly contradict them. Try talking to them to establish why they have made that decision. You can also consult colleagues (and if the situation is more serious, then your medical defence organization) if you are uncomfortable with the way a situation is being managed.Write down relatives’ concerns in the patient’s notes. Documentation is key. Mistakes we’ve made: Avoid them! Do not underestimate how much caring for dying patients can affect you. Take time to reflect on your feelings, and if necessary speak to fellow colleagues about how you are feeling. Write things down and draw clear diagrams for patients to look at after you’ve gone. Patient information leaflets are very helpful at explaining conditions, treatments, etc. Do not leave patients waiting. If you promise to return, do so. People stay awake waiting for doctors to return. If you can’t visit when you said that you will then call the ward and ask for the patient to be informed that you will be late, and when you will come instead. Never give the patient the impression that the medical staff have given up on them. Someone can always be present to help deal with their symptoms. Statements like ‘whatever happens we will do our best to take care of you’ are fairly non-specific but can be immensely reassuring to a sick or dying patient. Similarly telling relatives that their loved one will be made comfortable can be immeasurably important. Contrary to intuition, dying patients do not need to eat. It can be cruel to force them to do so. Sometimes patients are given IV or subcutaneous fluids to help with hydration. This can be a real area of concern for relatives and requires careful explanation. Never give patients a ‘date or time of death’. You will probably be wrong. Also, it is awful for all concerned if the patient lingers on after they ‘should have died’, or if they die sooner than the date you have given. Pain control Pain is one of the things that dying patients are most afraid of. You can help them enormously, but you may need help:
Use the pain team and ask for senior advice sooner rather than later. Syringe drivers and patches can be helpful if the patient is no longer able to swallow. Remember the person may not admit to being in pain (check their pulse or ask relatives and nursing staff). Physiological signs of pain include tachycardia, hypertension, sweating, lacrimation and pupillary dilation. Reassure patients that severe pain can be controlled, however severe. Symptom control The BNF has a fabulous section on symptom control in terminal care (look under ‘Terminal care’ in the index) that we have not tried to replicate for fear of being too quickly outdated. Your hospital will often also have a local policy for prescribing for terminal care that you can use. If not you can always ask the palliative care team for advice.
Prescribing for the dying Following the controversial withdrawal of the Liverpool Care Pathway (a once ubiquitous document that guided the care of dying patients) there is increased focus on the way in which the dying are cared for. The principles remain the same – maximize the patient’s comfort whilst avoiding excessive medical intervention. Many drugs are available as suppositories, which are useful if the patient cannot swallow or is vomiting. Keep drugs as simple as possible. Only prescribe medications that the patient will actually receive a benefit from. Discontinue when close to death if not required. Keep analgesia continuous. IV or SC opiate infusions are useful for this as are pro re nata (as required) doses to back up regular doses of analgesia. In dying patients, the ultimate aim is pain control and quality, not quantity of life. Discuss pain management with the nurses so that they do not simply stop infusions to avoid respiratory depression.Consider patient-controlled analgesia. Discuss with the ward pharmacist. The pain team/anaesthetists are also experts in this and can be called upon in times of need. Consider withdrawing IV fluids but discuss with seniors and relatives first. Patients’ fluid requirements reduce when they are dying, so often, 12–24 hourly bags of fluid SC or IV will suffice. Excess fluids can lead to fluid overload and respiratory secretions. Infusion pump troubleshooting:Light not flashing – pump not plugged in and battery inserted wrongly or run out Infusion running too fast or too slowly – syringe incorrectly inserted, rate wrongly set, tubing kinked or blocked and needle site tissued Support for the dying and for you Hospice (NHS or non-NHS), chaplain and hospital bereavement officer (if you have one).
CRUSE (widowed people caring for the newly bereaved), Cruse House, 126 Sheen Road, Richmond, Surrey TW9 1UR. Go to www.cruse.org.uk for a list of local telephone numbers.
Macmillan nurses (nurses specially trained for palliative care), part of Macmillan Cancer Relief, Anchor House, 15–19 Britten Street, London, SW3 3TZ. Tel.: 0808 808 00 00 (free phone). www.macmillan.org.uk .
Marie Curie Cancer Care, Marie Curie Memorial Foundation, Head Office, 28 Belgrave Square, London, SW1X 8QG. Tel.: 020 7599 7777 (England), 01495 740 888 (Wales), 0131 561 3900 (Scotland) and 028 9088 2060 (NI). www.mariecurie.org.uk .
