Most of us are apprehensive when seeing a hospital doctor, particularly if we have never met the doctor before. It is good to take a relative or friend with you into the appointment. This person can help you remember things you wanted to ask, and make a note of important things you are told.
Try to arrive in good time; parking and finding your way around a hospital can take longer than you think. Take a list of any questions you have and ask for anything you do not understand to be repeated and explained. Hospitals are aware of patients' needs and provide a Patient Advice and Liaison Service (PALS for short), which can help if you have ongoing concerns about the medical process.
Deciding about treatment
Decisions by doctors about a person’s treatment will, whenever possible, be a joint decision with that person (together with family or friends, if the person wishes). The opportunity to accept or decline medical treatment will normally be given both at initial diagnosis and when treatment is no longer helpful. The patient and their families will usually be given appropriate information and sensitive help when deciding which option to choose.
Most of us with a serious illness will want to have treatment. But before making a decision, it is important to find out how effective the treatment is likely to be, whether it will cure or not and what the side effects would be. Sometimes, for example, in the very elderly, the treatment itself can be too severe to be given safely and this reduces the options available to the patient.
Sometimes there are choices to be made between one treatment and another. Increasingly, doctors are asking patients to decide between different treatments, or to choose between opting for treatment or not. This can be overwhelmingly difficult for some patients who would prefer a doctor they can trust to make the decision for them. When one treatment is likely to be as useful as another, there might be one that is more suited to you and your lifestyle. It is difficult to make an ‘on-the-spot’ decision. Usually, there is time to take the information sheets away and have a discussion with any family and friends you wish. It is important to consult your GP, who will have the experience and wisdom to help you. Remember though that the final decision is yours and you must feel content about it.
When there is no longer any useful treatment/ stopping treatment
Sadly, a time may come when there are no further treatment options for the doctor to suggest. Doctors have been trained to put things right. Death at the end of treatment is not the outcome they want, and they may feel they have failed. They may assume patients would rather not discuss death. There is a fear, even among doctors, that talking about it will hasten death or make someone lose hope. In fact, neither of these fears is true and patients are often helped by the honesty of truthful information. Many doctors are not good at talking about death and so often do not tell patients and their families when death is approaching. It is a subject that we all find difficult, but need to discuss. It is good to talk.
Peter, a member of my family, was 54 when he was found to have severe spinal arthritis reducing the movement and feeling of his legs. An operation was advised, which turned into several operations because the wounds would not heal. He was in intensive care. His legs would not work at all. His memory was affected so that, although he could have a conversation, it was forgotten within seconds. In spite of family intervention and against their wishes, his doctor insisted on continuing with operations and medication and in the end Peter died while still being investigated.
It makes sense, therefore, for doctors and other medical staff to find out what patients and their families actually want in the last days/weeks/months of life, when treatment has virtually no chance of bringing about any improvement. A discussion gives the opportunity for active treatment to be stopped, and for proper palliative care to be provided (such e aims to manage symptoms such as pain and make the process of dying as comfortable as possible). During its provision, any attempts to change the progress of the disease are stopped. This means that patients who do not wish to pursue active treatment can do what is important to them rather than having to visit the hospital repeatedly and deal with side effects of treatment. (See chapter 4 for more about palliative care.)
A GP wrote to me: ‘It is not unusual for patients to come to see me asking (or seeking permission) to decline further intervention, especially chemotherapy. Patients can feel pressured into treatment because the doctor feels that it would be a failure not to be able to treat further, or treatment is bound to be what the patient wants, or that they will be criticised if they don’t or for research interests. Sometimes treatment is not in the patient’s best interests and actually can get in the way of accepting and planning death.’
Is treatment ever denied or stopped because of expense? Treatments that have been shown to have definite benefit are almost always available for use. But some treatments are extremely expensive, and I have often heard patients and families ask if they are being denied treatment because of cost. In my experience, the usual reason for refusing to give a particular treatment is that it has not been fully tested to ensure that it is sufficiently safe for use. In the UK, we are very privileged to have the National Health Service (NHS) as well as world-class medical research. The National Institute of Clinical Excellence (NICE)1 is the part of the NHS that is responsible for setting out compulsory standards for medical services, so that they are not only safe but of the highest quality, as well as being cost effective. If the benefit of a treatment is likely to be very slight, it might be thought not worth either its financial or toxicity (severe side effects) costs. Many treatments compete for the limited resources of the NHS: vaccines for children, care for older people, accident and emergency for the whole population, as well as treatment for cancer and many chronic diseases. All must be provided for. Sometimes difficult decisions do have to be made.
Cardio Pulmonary Resuscitation (CPR) 2
Sometimes the heart stops suddenly, for instance, after a heart attack or drowning. It must be started up within very few minutes to avoid death. In this situation, there is no time for discussion or choice. Action must be immediate.
Doctors in the 1950s developed a way of trying to restart the heart (i.e. resuscitate someone) after a sudden ‘death’. Since the 1970s, the general public has been encouraged to learn this way of controlling the breathing and keeping the heart pumping until there is medical help.
This is always worth trying but is not always successful; nor is it without risk. In hospital, even where immediate medical help is available, resuscitation is often not successful and afterwards less than one in ten leave hospital. Those with advanced life-threatening disease (e.g. cancer) are extremely unlikely to be satisfactorily resuscitated. Similarly, information on the very elderly indicates that only one in every twenty people resuscitated in nursing homes and then transferred to hospital ever leave hospital again. Some who do start breathing again never regain consciousness or cannot live without medical machines, and some are brain damaged.
Do Not Attempt Resuscitation (DNAR) Directive/Decision
In the course of a patient’s treatment, many medical choices and decisions have to be made. In some cases, doctors may conclude that the patient’s serious condition is not responding and will not respond to further treatment. In that event, although death may not be imminent, doctors might suggest that, when the heart and breathing do stop, resuscitation as described above should not be attempted. The patient should be allowed to die ‘naturally’. This is something for doctors and their patients and families to decide together.
A GP or a hospital doctor can ask the patient, or the patient can ask the doctor about this. Together, they decide whether a Do Not Attempt Resuscitation (DNAR) directive is reasonable. Without this directive, ambulances are called and full attempted resuscitation is started. This involves repeated pressure on the chest, fluid drips, artificial breathing and electrical stimulation to the body. If it does not work this is not a nice way to die. For most of us it would be better to die in peace.
Two weeks ago, as I write this, a close family member aged 90 collapsed in her nursing home where she was becoming increasingly frail. She had been reluctant to sign that she did not want resuscitation and so full resuscitation was started and continued in the ambulance. She did not survive the journey. She did not have the peaceful death I had wished for her.
Similarly, in hospital, however ill or elderly the patient, resuscitation procedures will be carried out unless they and their doctor have previously agreed that this should not be done.
Equally difficult, but very helpful, is to have what is called an Advanced Directive or Advanced Decision, also known as a ‘Living Will’. This is a signed document which lists what you would not want to happen to you in the event of an immediately life-threatening event. It is something you can do to influence a medical decision in the future. It enables you to think about what you would like to happen if you lose the ability to take informed decisions about your care. Examples of such decisions include: artificial feeding, cardio pulmonary resuscitation and life-saving treatment when the brain has been damaged, after a stroke, head injury or dementia.
Considering an advanced directive also provides an opportunity for you to decide if you would or would not want to donate your organs.3 Information about how to do this is provided in Appendix 1.
Often, people have seen family or friends kept alive by doctors, rather than being ‘allowed to die’ naturally, and many people do not like to think they might die whilst connected to life-sustaining tubes and other equipment.
E. was a very special and loved wife, mother, aunt, great aunt and grandmother. In her 80s she had a stroke and initially was not expected to survive. Although she was unable to communicate in any way, the doctors gave her a permanent feeding tube that kept her alive in a nursing home for many months. She was unable to speak or give any indication that she understood what was being said. Her family were sure she would not have wanted to be in this condition at the end of life.
It is important to tell your family about any of these decisions that you make so that, if you are suddenly in this situation, they can tell medical staff. If the doctors involved do not know about this decision, they will attempt resuscitation and other measures to continue life.
Power of Attorney
If you are reaching the time when you might need help with decision-making, then you should think about who you want to appoint to do this for you. This is called a Power of Attorney and is explained in chapter 12.
Decisions for the elderly
Improvements in social and economic conditions, and particularly in medical science, have resulted in more of us living until we are over 80 and many well beyond that.
None of us is going to last forever, but the timing of death depends on our genes, lifestyle, gender, and many other personal factors, both known and unknown. Although we hear about remarkable 90 or 100 year-olds, most people at these advanced ages are not able to live independently and many need a great deal of care. The inevitability of decline for those of us fortunate enough to live into very old age has been said to be the price we pay for living longer.
A doctor in an affluent part of America spoke about some of his patients: ‘They think they’ll always be able to play strenuous sports or travel anywhere they want to or continue working twelve hours a day. They assume if something goes wrong I’ll be able to fix it. But one day they’re going to wake up and discover they can’t do everything they once did. Someday they’ll be old and they won’t like it because they’re not emotionally prepared for it.’4
So we need to be realistic about the future and, whatever age you are and health you are in as you read this, now is the time to make sure you have an up-to-date Will. Distribution of your money, property and possessions needs to be thought about in time. The majority of us in the UK have not made a Will although more than half of over-55-year-olds have done so. (See chapter 12 for advice.)
‘But I still have not signed my Will, because it is thought provoking and sad. Seeing my Last Will and Testament, bound in card and bearing my name, was a strange, almost out-of-body, experience. But equally, as soon as it is signed I can put it in a drawer and concentrate on living. Maybe it is not such a big deal after all.’5
Make your choices before it is too late and make sure your family know your wishes so that, in the event of a life-threatening emergency, they can tell the medical staff. If doctors don’t know your wishes, they will definitely start resuscitation efforts.
In this chapter, I have tried to provide straightforward information to help those with a serious illness and their relatives in coping with what may seem daunting experiences. To conclude, I have set out the key points:
Key Points from this chapter
- It is usual today for doctors, nurses and others in health care to encourage patients to take part in making decisions about their own health and care. This is particularly necessary in the areas described in this chapter.
- Having someone you trust with you when seeing a doctor for important decisions is recommended.
- When cure has not occurred and treatment against the disease is no longer helping, a change to palliative care might provide more benefit.
- Resuscitation is unlikely to be successful in those who are frail from illness or advanced years. In these cases, a Do Not Attempt Resuscitation directive is appropriate.
- We will all die. However, none of us knows when sudden completely unexpected death might occur. Less than one in ten deaths are sudden and without warning.
- Even if you are fit and well the preparation of an Advanced Decision or Directive is encouraged. There is help with this in Appendix 1.
- A Power of Attorney gives a person of your choosing the responsibility for your medical decisions and financial affairs, when you are unable. It can be drawn up now and brought into effect when needed – see chapter 10.
- Making a Will is something we can do that will help those left behind – see chapter 12.
- National Institute for Health and Care Excellence (NICE): www.nice. org.uk/
- Resuscitation Council (UK): www.resus.org.uk/
- NHS organ donation web site: www.organdonation.nhs.uk/register-to-donate/ for medical purposes in the event of your death
- Graham, Billy, Nearing Home, Life, Faith and Finishing Well (Thomas Nelson, 2011), pp7-8.
- Lucy Townsend, BBC News Magazine, 19 October, 2011.
Gawande, Atul, Being Mortal (Profile Books, Wellcome Collection, 2014). Mack, Jennifer W. and Smith, Thomas J., ‘Reasons why clinicians do not have discussions about poor prognosis, why it matters and what can be improved’, American Cancer Society, 2012 http://jco.ascopubs.org/content/30/22/2715.full.pdf+html
Worth, Jennifer, In the Midst of Life (Weidenfeld & Nicolson, 2012).