4. Talking about dying - when, where and how?

Elaine Sugden

  • Book Chapter

TALKING ABOUT DYING: WHEN, WHERE AND HOW?

Elaine Sugden

Growing old

Whilst 70 (‘three score years and ten’) used to be the expected life span, with modern medicine this is now not so. We are living longer and, at the time of writing, the commonest age at death for men is 85 and for women 89 whilst many live into their hundreds.1 Most of us agree that living into these later years is fine if we are fit and well, but that is the exception not the rule and few very elderly people are independent. Of course, it helps to keep active and eat sensibly but even so, as the years go by, our bodies wear out and do not repair as they did when we were younger. Ageing begins from the moment of birth. Few of us choose exactly when we die but, without exception, for everyone who is born the time to die will come. Although there is a right and proper human instinct for survival, we cannot beat death forever.
Around 500,000 people die in England each year. Today in the UK, death in old age is the rule rather than the exception. With an increasingly ageing population, the majority of older people will be living with a number of medical conditions and 1 in 6 of those over 80 have dementia.2 The art is to live well until the end.

‘For those living into the years of frailty, it is important to have goals and a purpose, to know what you are fighting for.’3

The limits of modern medicine

We live in the hope that modern medicine will always put us right. When I was training in medical school in the 1970s, heart attacks were a common cause of death. Now, because of a reduction in smoking, as well as the availability of medicines to reduce the risk and operations to improve the heart’s blood supply, sudden death from heart attack is much less common. Cancer is still known to be a great killer, but medical progress has improved cure rates and increased the length of remissions so that we expect, even after a diagnosis of incurable cancer, to have several years of life before death. Whilst we feel well, we can’t imagine any of these things happening to us.

At bottom no one believes in his own death, which amounts to saying: In the unconscious each of us is convinced of his own immortality' Sigmund Freud, in Reflections on War and Death 4

Some very elderly people who are medically ‘rescued’ from death never regain independence, or are never able to communicate with others or enjoy life in any way again. In cases like this, the only purpose in living is to keep the enemy (death) at bay. enemy (death) at bay.

Artificial feeding can maintain this difficult situation for months or even a year or more. Perhaps it is such people that physician-assisted suicide is thought to help? But wouldn’t it have been better not to prolong life artificially in the first place?

Death is not of course a failure, death is normal. Medicine fails the people it is trying to help (by its) intrusive treatments. (We are) victims of our refusal to accept the inevitability of decline and death.' Atul Gawande, Being Mortal 5

Medical intervention can keep someone alive in such a state that it is very difficult to answer the question whether they are dying or not. Sometimes it is the family who are holding out for a cure and encouraging the patient to continue with any treatment offered. Atul Gawande, Being Mortal 6

Lack of care can be even worse.

A much-loved uncle of mine lived until he was 99. Towards the very end of his life, he had been in and out of hospital and patched up several times. The time he died he had not been looked after as well as usual. He had been moved between hospitals, left alone and uncared for, his family not knowing where he was. It was many years before his daughter could think about the times he had been well looked after in hospital because of the picture in her mind of his dying state.

Cicely Saunders, founder of the hospice movement, wrote: ‘How we die remains in the memory of those who live on.’

Fears about dying

The most often quoted fear about dying is that it will be painful, or at least that the time leading up to death will be painful. Some fear dying in hospital. Some fear dying alone. Many fear mostly for family and friends, and worry about how they will cope, especially if there is a dependent relative or friend. Most say they don'Äôt mind dying, but don’t want pain or other problems that might come before death. Only a few admit to being anxious about what might, if anything, happen after death. (Chapter 9 explores this further.) Over half the deaths in the UK are in hospital; families often keep a long vigil at the bedside, anxious that their relative should not die alone.

Palliative/hospice-type care of the dying
 

It must be true to say that we all hope to die without pain. Physical pain can almost always be controlled with the modern use of morphine-type pain medicines that leave the person fully conscious and alert. It is important for all doctors and nurses to learn the skill of using these medicines.

The hospice movement, pioneered by Dame Cicely Saunders who founded St Christopher’s Hospice in London UK, one of the first hospices, made control of pain and other symptoms a founding principle. ‘Palliative care’ has become a well-known phrase and describes treatment, not against the disease itself, but to control the symptoms produced by the disease.. ‘Active treatment’ (aimed at controlling the disease) and palliative treatments (to reduce symptoms such as pain, breathlessness, nausea) need to be used together, until active treatment is no longer able to help or make a difference. Then, palliative treatment, often called '‘palliative care’ can take over fully.
 

To some people, replacing treatment aimed at cure or prolonging life with palliative care means that the doctors are ‘giving up’ on their treatment and even abandoning them. It can be hard to leave the care of a doctor who has worked hard over the years to keep you well, and has become a trusted friend. In fact, further active treatment could do more harm than good, and the palliative care team is likely to make a worthwhile difference to quality of life. It is not unusual for a patient to live longer than expected once '‘holistic’ (all- round) care is underway.

Patients worry about stopping treatment even if new symptoms are occurring and treatment is obviously not working. Doctors worry about denying treatment that just might give the patient more life. And so it continues and the confrontation with the much more likely death probability is deferred. We imagine that we can wait until the doctors tell us there is nothing more they can do, but doctors can almost always do something. When should they stop? Cancer Care study, JAMA (an international medical journal)

Pushing on with more treatment when the chance of response is very low and the risk of troublesome side effects is high can remove the opportunity to prepare for the death that is inevitable. In general doctors overestimate a patient‘Äôs survival time, they don’Äôt like to be unduly pessimistic and talking about death is difficult.Atul Gawande, Being Mortal 7

If you could choose - How would you like to die?'

Richard Smith, a doctor and former British Medical Journal editor, suggested four ways.

* A sudden death’which many of us would choose for ourselves. But most people who have experienced this in a close relative or friend know that it is very difficult for those left behind, with no time to say all the things they think they would have said, including ‘goodbye’.

* The long slow death of dementia, definitely not favoured by those who have experienced it in family or friend.

* The ‘up and down’ death of organ failure, often in hospital or seeing doctors.

* A cancer death where you are often reasonably in control for a shorter or longer time to do some of the things you wish to do before, what is often, a fairly speedy end.

Dr Smith said in his article that he preferred a cancer death. There were a lot of responses to his article. The fact is, we do not choose.

Dementia
Those who have witnessed dementia in a close relative  or friend fear this decline more than any other. Those developing dementia of any sort usually realise only too well what is happening to them. Fortunately, today there is more general awareness of this condition, which is important to acknowledge and seek help for at an early stage. In some cases, medication can have an effect on the progress of  the disease. Even so, conversations need to be had, so that the sufferer can decide whom he/she would like to make decisions, on their behalf, when they can no longer do that for themselves. A Lasting Power of Attorney (LPA) can give someone you trust the legal authority to make decisions on your behalf. This can then be implemented at a later stage if you lack mental capacity or no longer wish to make decisions for yourself. (See chapter 12, Practical Matters.)

For a person of ripe years to die in sleep or in a chair couldn’t be bettered. My mother did just that but only after 30 years of progressive Alzheimer’s dementia ‘ not inaptly called a ’living death' - of self if not body.

A different sort of pain

For most people nearing death, pain can be controlled. The knowledge of how to use medicines against pain has been pioneered by the hospice movement and has spread throughout the UK, and the rest of the world. However, there is still a long way to go before every doctor and nurse understands the use of these medicines. More difficult to control is the ‘psychological pain’ that doesn’t respond to medicines or other ways of controlling physical symptoms.

Psychological, mental or emotional pain can be severe and uncontrollable. This type of pain needs a different approach because it comes from anxiety about unhealed loss, guilt, scarred relationships or other deep hurts. Spiritual concerns, which can be closely related to emotional concerns, are also able to produce very real pain. (See chapters 9, Life after death and 10, Facing up to fear). Hospices provide ‘holistic (all-round) care’  to meet the physical, social, psychological and spiritual needs of patients and those of their family and friends.
 

‘Sometimes the right medicine isn’t medicine at all, and the most important skill is in knowing how to talk to someone.’ 9


Access to hospice care


There are hospices in or near most towns and cities throughout the country. But sadly, it is not possible for   all who want to do so to die in a hospice. Hospices have more generous staffing numbers than hospitals and so are expensive to run. In general, most of their funding comes from charitable giving. In this way, whilst they must still have government Quality Reviews,10 they are independent of the National Health Service and can run as they wish.

The 2013 figures suggest that only 7% of us say we want to die in hospital whereas half of us in fact do 11


Many of the patients I treated for cancer wanted to die in the hospice. For some, this was possible, but for others, it was not as the hospice became full when they reached the last few weeks of life. What can be offered is good palliative care at home (where 67% say they want to die) or in hospital (where half do die) and efforts are being made to make sure this is possible, usually through Macmillan or
other community nurses. Hospice-type care is brought into the home, nursing home or hospital.
It is easier for cancer patients to access palliative care than for those with other diseases. It is important that good palliative care/end-of-life care becomes available for all.

Dying at home


Given the choice, a lot of people would prefer to die in their own home, surrounded by their loved ones. And some cases of sudden death take place in the home. When death does occur at home, it is important to know just what to do. A checklist for this is provided in Appendix a.

The ‘Dying matters’ website12 asks four questions to help you think:

     * Where do you want to die? 'Äì at home, in a hospice, in a hospital, in a care home, or somewhere else?
     * When you are approaching the end of your life, is there anything you want to do? -  do you have a list of these, a ‘bucket list’?
     * When you are approaching the end of your life, how do you want to be cared for? - What medical support do you want? Are there any medical procedures or treatments you don’t want? Do you have a preference for who cares for you? Do you want any spiritual support (i.e. support related to meaning and purpose, whether you are religious or non-religious)?
     *  What do you want to happen after you have died? What sort of funeral do you want? Do you want your organs to be donated to help others to live? Do you want to donate your body to science? Have you made a Will, is it up to date and where is it?
 

 Physician assisted suicide


     Those wanting euthanasia or physician-assisted suicide for themselves do not fear death, but want to control it or control their experience of, or fear of, unbearable symptoms or dependency on others. We have become used to having choice in most areas of life. Should we also have a choice in how and when we die? Fears of pain and dependency, as well as the exercise of choice at the end of life, are driving the increased pressure for euthanasia and doctor-assisted suicide.
     These are the meanings of the terms regularly used when discussing this topic:
     * Euthanasia: is the intentional killing by act or omission of a person whose life is thought not to be worth living.
     * Physician/Doctor assisted suicide: is intentional medical killing where the final act is performed by the patient.
     * The withdrawal of treatment that is futile or burdensome, or where the person is actively dying, is good medical care and should not be confused with euthanasia.
     * The use of strong pain medication at the end of life, given to relieve symptoms, not given for that reason and might hasten death but is is not euthanasia.

The legal situation


 Different countries have different legal rules. At the time of writing, most countries, in common with the UK, have not changed their law; euthanasia and physician-assisted suicide are still prohibited. Although some doctors in the UK are in favour of being able to assist patients to end their lives when death is expected within six months, at present the majority are not. Doctors and health workers, trusted as healers, do not wish this change in their role. However, in some countries, physician assisted suicide by lethal injection is now legal. In Belgium there has been gradual widening of eligibility for this ending of life; children of any age, with parental consent, are now included.

Circumstances can leave a person alive but without full consciousness or the ability to interact, with only artificial feeding and/or breathing sustaining life. Withdrawal of this life-sustaining technology usually has to be tested in the courts before it can be carried out legally.

Compassion and dignity

Those who wish for the legalisation of assisted suicide stress compassion and dignity. But concerns remain. What will be the pressure on the lonely elderly, recently bereaved or depressed to seek death? What about those who lack the capacity required for consent?

Compassion and dignity are indeed essential components of dying well and are needed all along the way, from a difficult diagnosis through tough treatment and into the terminal phase. Compassion from family and carers, and dignity in the way they are treated, are also needed in the care of the elderly as they reach their final years.

As good a death as possible

Depending on our beliefs, backgrounds and personalities we look on the issues differently. There is, however, general agreement that each individual death should be made as good as it can be, remembering that each person is part of a wider family and community.

Interviewer to David Attenborough in the context of discussion of assisted suicide:13
‘ Do you think people should have the right to take their own life?’
‘Yes, I suppose I do as long as you can solve all the problems associated with misuse of that right.’ 

Dying and death are never easy for the dying person or those close to them, accompanied as they can be, by pain and anxiety on part of both the dying person and their family, lack of or insufficient medication or sudden death leaving so much unsaid and no goodbyes. There is no ‘perfect’ death, not least because there are those left who deeply grieve and those who were out of reach at the time but who wanted to have said their last goodbyes.

How can we make dying as good as it can be in each situation? Those of us who believe that life is given by the God who commanded: ‘you shall not kill’ (Exodus 20:13), regard euthanasia or assisted suicide as wrong and unacceptable.  Arguments in favour of legalising both procedures focus largely on the need to show ‘compassion’ by addressing the suffering of dying patients. Proponents argue that it is kinder to allow patients to end their lives prematurely that to force them to live with unbearable pain. However, distressing symptoms (such as severe pain) can be effectively managed through the provision of high-quality palliative care, making assisted suicide and euthanasia unnecessary. The Royal College of Psychiatrists e agreed that with proper palliative care, it is possible for patients to ‘die with dignity’.14

Rather than licensing doctors to dispense lethal drugs, the most compassionate response to suffering would be to improve standards of palliative care and make it available to all those who need it. Such care also gives an opportunity for love and care to be shown to a loved one who is dying

‘My wife was told by our family doctor that I would die a painful death within 3 months. I wished for euthanasia -  my death is inevitable - (but) since coming under the care of the Macmillan Service my pain has been relieved, my ability to enjoy life restored and my fears of an agonising end allayed. I am still alive today - I am living a full life’.15

‘The aim is a good life to the end - assisted living is harder than assisted death.’ Atul Gawande, Being Mortal 16

‘You matter because you are you. You matter to the last moment of your life and we will do all we can, not only to help you die peacefully but to live until you die’. Cicely Saunders, founder of the hospice movement

Purposeful Living

'For those of us coming nearer to the end of life, our steps may well be slow but they need not be without purpose.' Billy Graham, Nearing Home: Life, Faith and Finishing Well 17

In the years when health, and particularly energy, is declining there are still things to be done to give a purpose to life. Spending time with grandchildren or other young people is of great value both to you and to them. Tell your stories and, if possible, write them down before it is too late. Meet with others for meals, to watch the television, listen to the radio or play games. Face-to-face communication has been shown to improve well-being and keep the mind active much more than the TV or a computer screen - and this goes for children as well as adults.

‘In those last weeks or days people share memories, pass on wisdom and keepsakes, settle relationships, establish their legacies, make peace with God and ensure that those left behind will be OK. This is important both for the dying and those left behind.’ Atul Gawande 18

How do we die?
 

When asked how we would like to die, most of us say that we would like to die suddenly. Not all agree and some would like time for goodbyes and making arrangements. Up-to-date records in the UK show that, of all people who die, less than one death in ten is sudden. Most deaths (more than nine out of every ten) occur after a variable period of illness, with gradual deterioration before a dying phase at the end. During these last hours the person seems to withdraw from life, their breathing becomes shallow, their voice weak and although the breathing may sometimes become noisy, in general they just fade away.

In her book In the Midst of Life, Jennifer Worth - also author of Call the Midwife - on several occasions speaks about the time of death:

‘To be present at the time of death can be one of the most important moments of life. To see those last awesome moments of transition from life into death can only be described as a spiritual experience. And then afterwards, when the body lies still, one gets the strange feeling that the person has simply gone away, as though he/she has said “ I’m just going into the other room. I’ll leave that thing there while I’m gone, I won’t be needing it.”’

It is not possible to predict accurately when death will occur. Some patients may appear to wait for someone to visit or for an important event, such as a birthday or a special holiday, and then die soon afterward. Others experience unexplained improvements and live longer than expected. A few seem to decide to die and do so very quickly, sometimes within minutes.

Care provided during those last hours and days can have profound effects, not just on the patient but on all present, including both family and professional caregivers at the very end of life. There is no second chance to get it right.

Key points from this chapter

* Life expectancy is increasing.

* Modern medicine has helped to postpone death in the elderly so that more are living with increasing frailty and dependency. It is important to have thought about and made some preparation for death.

* In general, natural death can be: sudden, a result of organ failure, because of cancer or with dementia 'Äì but we do not choose.

* Death and dying are not easy. There is no perfect death but each death should be made as good as possible.

* Palliative care can be used alongside active treatment and can improve quality of life by the control of pain and other symptoms. Used well, it can ensure as good a death as possible and allow the patient to die with dignity.

* The withdrawal of treatment that is no longer useful or is causing distress, or the use of strong medicines to control pain at the end of life are not active euthanasia.

* It is important to have a purpose for living even in the years of frailty.

* Care at the end of life and how we die is extremely important. There is no second chance to get it right.

Notes

1 Office of National Statistics (ONS) http://ons.gov.uk/

2 Dying Matters website www.dyingmatters.org/

Alzheimer'Äôs Society statistics: www.alzheimers.org.uk/statistics.

3 Andrew Marr, Radio 4, Start the Week, 10.11.14, A Good Death.

4 Sigmund Freud, in: Reflections on War and Death, translated by A A Brill and Alfred B Kuttner (New York: Moffat, Yard and Co., 1918).

5 Gawande, Atul, Being Mortal, (London: Profile Books, 2014), pp8-10

6 Ibid., p156.

7 Gawamde, Atul, op. cit., p 167

8 Richard Smith BMJ online blog: http://blogs.bmj.com/bmj/2014/12/31/ richard-smith-dying-of-cancer-is-the-best-death/

9 Napp (pharmaceutical company) advertisement in British Medical

Journal, 13th April 2013.

10 Care Quality Commission: www.cqc.org.uk

11 Public Health England. What we know now 2013. New information collated by the National End of Life Care Intelligence Network.

12 www.dyingmatters.org

13 Radio 4, Costing the Earth, 18th November, 2015

14 ‘ÄòRCP cannot support legal change on assisted dying ’Äì survey results'Äô http://bit.ly/1qj04Xf

15 Cancer patient writing to World in Action Team 1980 'Äì 8 months after diagnosis (in A Time to Die, Robert Twycross, Christian Medical Fellowship, 1994.)

16 Gawande, Atul, op. cit., p2

17 Graham, Billy, Nearing Home: Life, Faith and Finishing Well (Thomas Nelson, 2011), p130

18 Gawande, Atul, op. cit., p249

19 Worth, Jennifer, In the Midst of Life (London: Weidenfeld & Nicholson, 2010).

Other resources

Planning for your future care. NHS improving Quality (online only) discusses Advanced Care Planning and Advanced Directives.

Read here

Euthanasia and Assisted Suicide -  a Christian Response by Christian Concern https://talkingaboutdying.org/download-file/downloads/CC-Resource-Booklet-Euthanasia-and-Assisted-Suicide-200828__1_.pdf