The Sept/Oct issue of American Life League’s Celebrate Life contains a refreshing article about a hospice in Indiana that operates according to “faith guided” principals. I encourage you to read about Covenant Hospice . It is equally important to read the following article written by Dr Gerard Daly.
Palliative care can all too easily result in as a regime of sedating and dehydrating the dying patient and so hastening their death. The patient loses their autonomy and the quality of their life is more affected by the treatments given, ostensibly, to treat symptoms than the actual disease itself. The administration of drugs is often the first line of treatment when other forms of treatment would be preferable, such as making the patient comfortable and finding out what their needs are. It is very concerning how easily a pretext for sedating a patient can be given. It is sad that assumptions are made concerning the care of the elderly terminally ill so that as soon as a person is admitted a regime of drugs is administered. The patient may deteriorate as a consequence of this treatment. It is also of concern how there are assumptions concerning pain. There should be proper inquiries concerning the pain suffered by a patient, as not all cancer patients suffer severe pain that would justify the use of the syringe driver and diamorphine.
While symptom control is an appropriate objective in palliative care, it should be closely based on the individual needs of the patient. Yet too often drugs are deployed without a proper assessment and end up hastening the patient’s death.
It is a disgraceful attitude that the terminally ill are going to die anyway and this excuses their maltreatment or the hastening of their death. Just because a terminally ill person is going to die does not mean that the time they have left should be subject to the decision of others to hasten their death. The time that person has left is important for them and to administer drugs that hasten death is unlawful killing.
Terminally ill people can become more burdensome as their illness progresses. The terminally ill are themselves often aware that they are a burden or might become a burden on their carers. It is easy to see how handing over the terminally ill to institutions such as hospices and hospitals can be a relief for the carers. Little further inquiry might be given into the treatment of their loved ones, whom they think are being cared for. The fact that a person is going to die often suspends all critical faculties concerning the treatment administered and whether those treatments are clinically needed. The terminally ill are protected by law from unlawful killingas much as somebody who is not going to die.
To excuse or to justify or ignore the maltreatment of the terminally ill, and the hastening of their death, is shameful and unacceptable. It is an acceptance of involuntary euthanasia. It is saying that a terminally ill person’s life is worth less than a person who is not terminally ill. An unspoken assumption and acceptance of patients having their passage eased and hastened is unacceptable; it creates a climate and culture whereby the boundaries of euthanasia can be extended to include other groups. What is involved are judgements – usually made by anybody other than the dying person themselves – about their quality of life. Sometimes a patient is drugged or sedated into a state of stupor or unconsciousness so that they cannot express their views and wishes.
A regime of treatment may be imposed irrespective of individual patient needs. Administration of powerful drugs by a syringe driver has become almost routine in the last days of life.
The public has not yet caught up with the reality of modern day hospices. The propaganda and image presented by hospices, which rely on charitable donations from the public, is that hospices provide a caring environment for a loved one to die with dignity and with minimal pain. The reality is that hospices are run more like hospitals except that they are less well funded and often do not have the same standard of management. They also do not have the same facilities for patient treatment and care. It might be considered that hospices could provide that which is not considered as easily available in hospitals, namely care for the individual. However, the nurses in hospices are just as likely to be overworked or insensitive to patients needs as anywhere else.
Modern hospices are increasingly bureaucratic and managed like other health institutions. Some are involved in research in clinical care for the terminally ill that depart from traditional notions of care. The modern methods depend increasingly on harmful drugs which the patient may not need or which may be inappropriate. Less harmful treatments could be given which do not increase drowsiness and risk the patient becoming unconscious.
Hospices were originally places where the dying were cared for until death from illness progression. The nurses and staff were imbued with Christian values of caring for the dying. The patient was made as comfortable as possible and their spiritual needs were attended to. There was no question of hospices being associated with hastening death. This is the image that most people still have of hospices. The suggestion that maltreatment and the administration of drugs that hasten death are happening in hospices is difficult for people to accept.
Terminal restlessness is one area which should not be treated by sedation without due thought. It is sad that some hospice staff fail to consider the causes of terminal restlessness in an individual patient, but use drugs to treat this condition by sedating the patient. The comfort of the dying patient should be attended to and inquiries made concerning any physical symptoms such as constipation or urinary problems. The patient may be worried or suffering emotional distress. All too often sedation is used where care would be appropriate such as repositioning the patient, moving their legs, or transfering the patient from the bed to the chair. The environment where the dying patient is cared for should be made as soothing and calm as possible and he or she should be surrounded by familiar items. The problem in hospices, and also in hospitals, is that patients may be sedated for the convenience of nurses rather than any clinical need. If patients are anxious a thorough consultation should be made to inquire into the causes and whether drugs are needed. If the patient suffers with nausea, anti emetic drugs without a sedative should be used. Patients should not be drugged into unconsciousness rendering them incapable of stating their wishes, handling their own affairs and speaking with their loved ones. Drugs should be kept to a minimum in elderly patients and those with compromised renal and hepatic function.
It is also of concern that hospices make assumptions concerning the withdrawal of nutrition and hydration even though a patient might benefit from these. It is understood that a stage is reached in the terminally ill when feeding becomes burdensome and the appetite decreases. Some patients may no longer be able to swallow.
However, a patient who is not actively dying might benefit from continued nutrition with soft food and liquid food. Moreover, meal times can be psychologically good for the patient, even if the patient cannot eat much.
Meals provide a good social occasion for the sick. Rather than giving up on patients, food could be offered and patients tempted with food that they like. If they derive pleasure from an item of food, that is to be encouraged.
Dying people will benefit from hydration even when they no longer desire food. The terminally ill will suffer further pain from dehydration if attention is not given to this area by a hospice. Nutrition and hydration are needed for the care of the patient. They are basic human needs. However, some patients might be deprived of nutrition because of the time involved in feeding them rather than for reasons of nutrition being burdensome to the patient. I am concerned that plausible justifications are being used in the guise of palliative care to justify depriving the patient of nutrition and hydration even though they would benefit from it.
Doctors in general may be more prone to deprive patients of nutrition and hydration and provide a drug regime that is clinically unnecessary because this is considered as acceptable practise by leading professionals in the hospice movement. In this culture the elderly terminally ill risk being treated in a way which hasten their deaths. It is difficult to have a proper investigation of suspicious deaths in a hospice as the police often take the view that the person was dying anyway. The police are out of their depth in complicated medical cases where murder or manslaughter is alleged.
Quality of life
Assumptions are often made by doctors concerning the quality of life of a terminally ill patient. Some arrogantly assume that the person would like to be helped on their way. However, for the terminally ill every hour or day of life matters. Nobody has the right to deprive a patient of the time that they have left by hastening their death. Moreover the terminally ill person may well:
1. be accustomed to a high level of pain;
2. may wish to remain conscious, or would choose to remain conscious if advised that some drugs would risk the loss of consciousness or coma;
3. may wish to make decisions, attend to unresolved matters, meet family, people, or enjoy being at home.
The dying often have hopes and ambitions of things they would like to do before they die, however modest these might be. These should not be denied to them.
A diagnosis of a terminal illness is a frightening experience for anybody. But it should be a time for the dying person to decide how to make the most of the time he or she has left. It should be a time for love and care. A diagnosis of a terminal illness should not lead to a drug regime that diminishes the patient’s autonomy and hastens death. Holding the hand of a dying patient can provide more comfort than a sedative. The dying are entitled to full protection of the law as they approach their natural death. No one should intervene and deprive them and their loved ones of what time they have left. It is important to ensure that “palliative care” does not become a Trojan horse for involuntary euthanasia of the terminally ill.
Dr Gerard Daly, PhD, cared for his mother while she was ill with terminal cancer.