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Palliative Care is Everyone’s Business

Dr Lucia Mitchell is a General Practitioner and Palliative Care Doctor who works in Richmond, Nelson, New Zealand. She shares with us her submission to the Health Select Committee on the investigation into ending one’s life in New Zealand.

I oppose any legalisation of euthanasia or assisted suicide in New Zealand.

Death has in many ways been distanced from our daily lives and has become foreign, unfamiliar and feared. Health care developments in the last century have enabled people to live longer, and in better health, and the tradition of supporting a family member during a terminal illness has been lost. Yet we will all die. Normal dying is part of life, and we are richer if we understand it instead of fearing it.

A range of emotions can be experienced by those faced with a life threatening illness. This can include shock and disbelief, anger, denial, bargaining, fear, hope, despair, depression, guilt and acceptance – in no particular order. It is also very changeable and people will frequently go back and forth between different stages of grief. It is an enormous task, and sensitive listening can be very helpful for those in the midst of this experience.

Dying is a time of transition, a period of accelerated learning and growth. We all experience a variety of transitions during our lifetime, which we cope with in our own individual style. We will probably deal with the transition to death in the same way. Not everyone will experience all of the symptoms, but there are a few common themes. As with all transitions, there will be unpleasant or uncomfortable aspects which is part of the responsibility we have in the way we live our lives. We need to learn to live well and to die well.

Progressive loss of appetite is a hallmark of the dying process. People stop eating because they are dying – not the other way round. Reducing food and fluid intake is a way their bodies maintain comfort – and it is completely acceptable for the dying person to eat only what they want to. Bowel activity slows down and eventually may stop.

Circulation gradually diminishes with cooling of hands and feet, unexplained fevers and sweating. Urine output may fall, and some degree of dehydration will help to keep the dying person more comfortable. Repositioning every 2 hours will help prevent bedsores. Specialised mattresses can also help avoid this problem.

Fluid may accumulate in the lungs, but this can be avoided if fluids, especially IV fluids, are not forced on the patient. What was once called the death rattle is actually an accumulation of fluid in the upper airway. It can be quite loud and disturbing for caregivers and family, but does not usually cause the patient distress. Suctioning is not helpful, and likely to be quite traumatic for the patient. Breathing patterns can change during the dying process. Hours before death, a regular deep panting pattern can develop, with gasping and a few final deep sighs.

Sleep and dreaming are important parts of the dying process. Total sleep time increases, and provides the opportunity for the mind to process and review unresolved episodes which occurred during the person’s lifetime. Day and night no longer have much significance, and the dying person will just doze off and on. When awake, the patient will often reminisce about their lives. Confusion and disorientation can occur normally as well as a result of this processing. The palliative team can help interpret whether the confusion needs further assessment. Skilled palliative care is able to provide pain relief by a variety of means in the vast majority of instances.

When a cure is no longer possible, care is provided by palliative services. Palliative originates in the word “pallium”, which is a cloak or shield. This describes the action of cloaking the person and their whanau in care, supporting their physical, emotional, social and spiritual needs. It neither hastens nor postpones death

Syringe drivers are frequently used to achieve control of unpleasant symptoms such as pain, nausea, anxiety and excess secretions. This is a large syringe which has a simple battery operated pump. It delivers a combination of medications directly under the skin through a small needle in very small regular amounts every few seconds. The continuous delivery of medication provides very effective control, giving the patient flexibility to move around if they so wish as it is completely portable. It can be used anywhere, and is loaded every 24-48 hours by the palliative care nurses. The patient can go out if they so wish, and attend important family events, concerts and other social occasions.

Another very useful item is the midazolam spray. Midazolam is a very short acting sedative, and can be used in combination with longer acting medications. It is very well absorbed as a nasal spray, and works in 10 minutes to help with anxiety, breathlessness and pain associated with changing position or cares.

When necessary, patients are admitted to the hospice for a few days to achieve control of distressing symptoms with appropriate medication or procedures, or to give their families a rest. They are usually able to return home within a few days. Hospices will also provide end stage care – when the person is very close to death, and requires more management than can be provided at home. Support is offered to help the family cope during the patient’s illness, and in their bereavement.

Anyone with a life limiting illness is eligible for this care. It is not restricted to those who have advanced cancer, but also people suffering from advanced respiratory disease, heart failure, kidney failure, neurological disease or any other advanced progressive illness.

Many have found that walking alongside a dying family member or friend can be a surprisingly graced experience. Although watching a loved one die is incredibly painful, caring for them during this time is an important part of the healing process. It is a powerful way to express love, devotion and reverence. It gives the opportunity for deepening family relationships, and a chance for reconciliation. I experienced this personally with the death of my mother at home, and have seen it in my work as a general practitioner working in geriatrics, dementia care and palliative care.

Requests for euthanasia are not necessarily related to physical pain, but to feelings of depression, hopelessness and isolation. True compassion calls us to stand in solidarity with all who are suffering – a great society is evidenced by the care shown to the most vulnerable. We do not have to be able to do anything to be of worth. Simply to be is sufficient. Death with dignity occurs when a person’s deepest physical, emotional, social, cultural and spiritual needs are met – when a person feels loved, cared for, valued and included no matter what. Palliative care is everyone’s business. There are many ways in which we can help each other, and care for neighbours who are dying or bereaved.

I recommend that the Health Select Committee rejects the legalisation of euthanasia and assisted suicide and instead facilitates support for the vulnerable and needy.

Submissions to the Health Select Committee close on 1 February 2016.

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