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ADVOCATES for palliative care and voluntary-assisted dying (VAD) have been formidable warriors, on opposite sides in the public debate about the legalisation of euthanasia.
Now, when there is the prospect of the introduction of VAD legislation in Victoria in the foreseeable future, is it time to explore ways to affirm them both, and to ask whether they are, in some way, complementary?
Palliative care prides itself on being “patient-centred”. Indeed, some prefer the term “person-centred” to emphasise that the individual receiving care not be confined to the dependent status of a patient “under the doctor”, but enjoys freedom to express opinion, to participate fully in decision-making and, as far as is possible, to exercise a sense of personal control.
In countries where it is legal, VAD is also person-centred, affirming autonomy — available only to individuals fully capable of an informed and independent decision about the best management for them when the end of life is threatened by intolerable suffering.
There are, of course, important differences in the two approaches to assistance for a dying person. In its intent and timing, palliative care seeks to maintain the best quality of life in the face of threatening death. It offers a process, a continuous attention to symptom control, and emotional and social support extending, if necessary, for months.
VAD’s intent and contract is for sudden death, a single effective intervention, only minutes in duration.
Palliative care is essentially clinical; its basis is good medicine, demanding of clinical training and skill and, at the same time, proving flexible and responsive to the changing needs and wishes of the dying person and of family and friends.
Some might argue that VAD requires little clinical skill; in some countries, such as Switzerland, Germany, Japan, and Canada, it operates largely outside of established medicine. Where it is legalised, VAD is based in good law and is required to adhere strictly to the law’s demands. It is inflexible; it defines in clear terms who is eligible to request VAD, who may provide it, what processes of explanation, consultation and delay must be followed, and what reports must be supplied to a watchful authority.
Palliative care also takes advantage of good law. A practitioner offering palliative care for a patient with difficult and intractable discomfort in terminal illness may find that adequate relief is provided only with measures that risk hastening that patient’s death. In such circumstances, no criticism or change shall apply if the treatments prescribed accord with accepted palliative care practice.
In a similar vein, VAD can be good medicine, if a request for assistance to die brings to bear an unhurried, thoughtful and comprehensive approach of the experienced clinician. To ensure full attention to informed consent, underlying disease, symptoms, prognosis, other options for care and support of family throughout, VAD needs to embrace that clinical dimension.
Experience from countries that have legalised VAD suggests that requests for VAD for those who have major suffering in terminal illness will be few in number.
Palliative care will continue to carry the greater responsibility to provide relief for those patients, and the demand on its services will continue to increase. Though controversy may continue to bring it significant public visibility, VAD will provide only a very small part of the great mix of medical, social and political interventions that contribute to the public health.
Relatively few doctors may wish to practise VAD or build experience in its conduct. To ensure that it is done well and that it accords with best practice, VAD should seek to place itself alongside palliative care and learn from it.
The brisk legal imperatives that command VAD may be moderated through familiarity and close contact with palliative care. It may bring the doctor who approves a request for VAD an engagement with patient and family in far more than the assessment of a request and the writing of a lethal prescription. It may encourage the offer of a continuing medical presence willing to attend at the time a dose is taken, and to monitor later bereavement support for the family. That would be the way of palliative care.
Emeritus Professor Ian Maddocks is an eminent palliative care specialist, recognised internationally for his work in palliative care, tropical and preventive medicine. He was Senior Australian of the Year in 2013.
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I agree with JS KILMARTIN above, and encourage all my colleagues to embrace this approach, and that espoused by Atul Gawande in “Being Mortal”. A sound palliative approach, which has as its basis the inevitability of death BUT with emphasis on what is important to, and accepted by, the patient AT ALL TIMES. There is NO CASE for a one-sized approach, and sometimes VAD will be an ending chosen by some few persons for themselves, but VAD can NEVER be initiated for another person, ONLY by the patient themselves! If we all read and absorb what Gawande has to say, and act upon it, we will go far to meeting the needs of our terminally ill and those approaching their terminal events with much greater sensitivity. Knowing when cure/recovery is no longer a true option is the skill we all need to acquire and practice. Asking the right questions about what the patient expects of their proposed treatment is a good starting point- and a VERY ILLUMINATING ONE! Ensuring both patient and medical staff are actually on the same page can be MUCH more difficult than most of us realise! Health literacy has to be learnt, and it is much harder to assimilate the required knowledge when a frightening illness and its complex treatments are already over the threshold!
It appears that VAD is inevitably to become legal. But in spite of this, I still have concerns about how our patients trust in us might suffer if they think there is not much to stop us putting an end to their existence. No, it will not affect palliative medicine or how it is practised – palliative care service will continue to do their job and, if reports from overseas are a guide, not too many patients will opt for VAD. I agree with the suggestion above that families could use it to get rid of unwanted elderly relatives but one would hope that the law might be tight enough to prevent that sort of thing happening. What I would like to see as a check and balance though is for a palliative medicine specialist to have to be consulted before VAD can take place (obviously one who is not totally against it) – I think this could ensure that other possibilities have been canvassed and that it is medically reasonable. Depression is still a real consideration too – as there is a shortage of psychiatrists who would be available to ensure this possibility has also been properly considered, I really do not know how you frame legislation to ensure this is not the issue rather than ‘suffering’. i would remind everyone that most requests for VAD will not be because of inadequate symptom control, but rather loss of control.
Thank you, Professor Maddocks, for daring to explore the possibility that VAD can be done well and as part of the palliative care process. I write as a doctor who practises palliative care and as one who has been very much opposed to VAD for ethical and professional reasons.
I am sure there will be many who see your illuminating article as another challenge to the principles and practice of palliative care as we know it now. But your point is well taken – namely that VAD will become a reality in our future because every bill that has been presented to either state or federal parliaments in Australia have come closer to being passed. How will we deal with VAD when it eventually becomes a reality?
I suggest that the problem lies in binary thinking, i.e. ‘either-or’ thinking, which is very much the pattern of how our society and culture sees issues – patients with terminal conditions will be given a choice of either palliative care OR VAD. Why must this be so? Why can’t we have both ‘together-and’?
We believe that patients are much better served by good palliative care and we worry that the patients who choose VAD may not be accorded the same quality of care before they choose the ‘single, sudden intervention’ that will end their lives. So why not subsume VAD into palliative care, forget ‘either-or’ thinking, and give EVERY patient the same quality of care with VAD being only an option within the vast suite of palliative care options and resources? Even palliative care proponents admit that there are only a small number of patients with terminal conditions that actually request VAD and that as a last desperate option. Would it be possible that if they were given the benefit of good palliation, these few might even decrease in number?
I strongly support Professor Maddocks’ position that we should start working WITH the issue of VAD and not against it. I believe we ought to offer patients only ONE option – that of good palliative care with its range of options, including VAD, In my experience, patients mostly need reassurance that if all else fails, they can opt out completely. Intuitively I feel that this approach is the most sensible and the most rational.
I think it is naive to believe that the safeguards in the Victorian Act will be sufficient to protect the vulnerable from harm. In many years of practice I have had several requests from family members to effectively terminate the lives of their (usually elderly) relatives and that will not stop.
Is it likely that families seeking the death of a relative will seek out doctors who have a reputation for euthanasia?
Is it likely that such a doctor would seek second opinions from other doctors who are not advocates of euthanasia?
Is it likely that any bureaucracy that oversees this proposed practice will be composed of advocates of euthanasia, possibly appointed by governments that have an interest in justifying the proposed law?
I think the very reason why there is palliative care medicine is for people with life limiting or terminal illness to live the remaining time of their lives fully (if possible) and comfortably as well.
I have a problem with voluntary assisted dying as it means someone is voluntarily helping the patient die. As stated , VAD’s intent and contract is sudden death and based on law.
Personally and professionally, I don’t think I will make available myself for VAD.
I will continue to refer patients to palliative care.
It is good to see Professor Maddocks stating that “Voluntary assisted Dying can be good medicine ”
Prof Maddocks also writes that we must explore ways that palliative care and voluntary assisted dying can both be affirmed and seen as complementary.
The proposed bipartisan Victorian state law contains all the appropriate safeguards and would allow terminally ill people to chose Voluntary Assisted dying if they feel their suffering has not and cannot been relieved by palliative care.
The focus of TGA on existing and emerging pharmaceuticals is more important and regulation of herbal products is a second order priority. There is also a case for assessment and regulation of fragrances and other cosmetic products.