Palliative Care: What It Is and What It Is Not
Monday, 1 September 2014
| Barbara Hayes
Palliative care has its modern roots in the UK with the establishment of St Christopher’s Hospice in 1967 by (Dame) Cecily Saunders. Saunders had become concerned about poor medical care being provided to dying hospital patients. With the developments occurring in medicine at that time, the focus had shifted away from the needs of those who could no longer benefit from the evolving technology and life-saving treatment.
The modern hospice movement, or palliative care, was thus born. The goal was to use scientific rigour to research and treat symptoms such as pain. The focus was on the holistic needs of patients: physical, emotional, social and spiritual. Palliative care is the only medical specialty that has care of the spiritual person as part of its mandate.
Palliative care is applicable to any person with an incurable and life-limiting illness and the principles can be applied to that person’s care from the time of diagnosis – not just in the terminal or dying phase of the illness. Potentially, this means good symptom management plus supportive and holistic care occurring alongside: (i) life-prolonging treatment such as chemotherapy or surgery; and/or (ii) treatment of concomitant illnesses, such as infection. Palliative care may be provided by specialist palliative care services or by any other health care clinician, using the same principles to provide a ‘Palliative Approach’ to care.
Palliative care does not require that a person must forgo wanted life-prolonging treatment suitable for their condition. It does, however, acknowledge the reality of death and seeks to help the person to accept the inevitability of death and that dying is a normal part of life.
Palliative care should not be confused with euthanasia. Many arguments seek to obscure this distinction by claiming that the outcome (death) is the same for both and that the intention of both is to relieve suffering. These assertions are true, as far as they go, but I would argue that there is a moral distinction between giving a fatal injection and the interventions that constitute palliative care – care that historically has been largely provided by Christian health services that hold to the commandment ‘Thou shall not kill’.
Providing relief of symptoms with palliative care means titrating the medication against the symptoms. The aim should be to achieve the best control of symptoms with the least side-effects. We live in an era when we have many more medication options than even 20 or 30 years ago, so if one medication does not suit, there are usually others to try. Contrast this with euthanasia, where relief of symptoms and suffering is sought by the disproportionate means of killing the person. Sometimes, in palliative care, there will be situations where relief of very difficult symptoms, such as pain or shortness of breath, can only be achieved by medication doses that result in deep sedation. I would argue that this is also proportionate. The patient is either awake and in severe distress or asleep and comfortable; the choice is either dying with intolerable suffering or dying comfortably. There is no real choice here – the only morally good course is to treat the patient’s symptoms accepting the side effect of sedation that inevitably accompanies this.
Another common fear and misapprehension about palliative care is that treating symptoms will mean shortening life and hastening death; morphine is regarded with particular fear and suspicion. However, in most situations the careful titration of medication, as described above, will improve symptoms with no discernible effect to shorten life. On the contrary, I have observed patients who appeared to be imminently dying and in great distress but when symptoms were relieved, their general condition improved and stabilized for a period. We should not underestimate the potentially life-shortening effect caused by the stress, and distress, of severe uncontrolled symptoms. This is an area in which good Palliative Care is able to help.
Although palliative care doesn’t preclude receiving life-prolonging treatment this does not mean that a person is obliged to consent to all life-prolonging treatment. In Australian law each person is able to choose for themselves how much treatment they are willing to tolerate for limited gains in life expectancy, and to refuse treatment they do not wish to receive. As Christians, we know that this life is not all there is and that death for a Christian is life in Christ. There is, however, a responsibility to use this life well in service to God. The challenge is perhaps discerning when is it time to let go of this life. Paul’s letter to the Philippians (1:21-24) illustrates this tension well:
“For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body.”
Each of us will decide differently because each of us will have different life circumstances such as age, illness or responsibilities to others. Like Paul, a person may also believe that God still has work for them to do in this life. Others may feel that their life is approaching its natural end and are ready to relinquish this world when the Lord calls them.
The aim of palliative care is to support the person with incurable illness to live their remaining life as well, and as meaningfully, as possible and then to support them as they eventually die from their illness.
Dr Barbara Hayes is a palliative care physician who recently left clinical work to complete a PhD on 'Ethical CPR decision-making' and now works with Northern Health's Advance Care Planning program.