CHOOSING A ‘GOOD DEATH’: A SHORT MANIFESTO
According to Wikipedia, a “manifesto” is “a published verbal declaration of the intentions, motives, or views of the issuer, be it an individual, group, political party or government. A manifesto usually accepts a previously published opinion or public consensus, or promotes a new idea with prescriptive notions for carrying out changes the author believes should be made.” So here it is: our intention and motive is to inform all of us citizens of our views about what we should take for granted from our health system concerning appropriate care when end of life draws near, for themselves as well as for their loved ones.
Quebec now has a newly elected government. Why not seize upon the opportunity to ask our decision-makers-elect to address this specific health care issue. It is a fact of life that none of us are going to dodge?
First and foremost, I am now addressing all people suffering from late stage chronic illnesses, or incurable cancer. Even after having informed yourself as extensively as possible, never hesitate to call upon your loved ones to get yourself heard and understood.
As “end of life patients” in Quebec, we are entitled to:
A GOOD DEATH, with all appropriate support to contain suffering within limits as narrow as possible.;
Access to QUALITY palliative medical care, a basic right guaranteed by the “Law about End of Life Care- Loi de fin de vie” in Québec;
To discuss all END OF LIFE OPTIONS with our own doctor, including palliative care and medically-assisted death;
Our choice of the place to live in, up to our end of life, including access to well-organized HOME CARE;
Healthcare teams intervening on a COORDINATED, NETWORKED action basis;
Healthcare palliative teams comprising PHYSICIANS.
In short, we ask for quality palliative care, everywhere in the Province of Quebec.
I. Good death as a primary requirement
Early access to palliative care has been demonstrated time and again to be a determining factor in attaining what is understood to be a good death. By good death we mean where one is granted support and where optimal care is provided on a daily basis to keep suffering under control.
This end of life support, provided by palliative and terminal care (PTC) trained personnel, will allow any one of us to live this ultimate part of our life in a better way, to prepare our loved ones, and to ponder all the options we are entitled to. That is what we demand from our health system. Aren’t we all mortal?
When one is struck by a very serious illness that progressively deprives autonomy, our bearings are often lost, together with many other capabilities including the very meaning in life. Our brain is hardwired this way, so that even on the last day before a death long since predicted by physicians, the hope of life is maintained. This is perfectly natural.
It has been formally proven that early follow-up by a competent palliative caretaking team, including a physician, as soon as the terminal illness is diagnosed, greatly enhances quality of life and prevents disproportionate or irrelevant medical care.
However, asking for palliative care does not mean “giving up”; it is rather to ensure optimal quality of life through symptom alleviation. It is about making the best decisions concerning the evolution of one’s health and to implement all possible care measures.
Unfortunately, access to quality palliative care services is now provided erratically in Quebec, it is often difficult to obtain outside hospitals, notably for home care. We consider this situation to be unacceptable.
II. Knowing our rights
The Law on end of life care (Loi portant sur la fin de vie) guarantees everyone of us access to quality terminal care. Any person with a medical condition requiring those cares is entitled to appropriate and complete end of life care, including medical care.
This law guarantees not only medicallyassisted death under certain conditions, but also access to a full-range of quality end of life care at every place and location throughout the health network’s purview, and that includes one’s home.
III. Knowing all options
When one of us is facing a terminal illness and is informed that all possible terminal care options will be at one’s disposal (optimal pain and suffering control, cessation of treatments when one judges them to bring no benefit any longer, palliative sedation, medically-assisted death process…), strangely enough, anxiety subsides, suffering diminishes, greater calm and serenity settles in.
By making access to “medically assisted death” (Aide médicale à mourir) a legal requirement, the Law on end of life care has challenged many medical practitioners with considerable self-questioning. However, there is now more understanding on the complexity of the issue concerning the intensity of pain and, even more so, the invading nature of suffering experienced by many at the end of their life.
Terminal care medical practitioners are known to possess a valuable expertise, a greater than average sensitivity and also a good listening ability. Their services must be made available when one faces end of life, because the situation is often complex or when the regular physician cannot answer all questions. Each of us is entitled to discuss freely and without constraint all options available or conceivable regarding end of life. By the code of ethics of medical practice, this is called respect for patient autonomy.
For instance, if a medical practitioner has objections of conscience regarding “medically-assisted death” (Aide médicale à mourir), that’s his own right, his personal decision belongs to him. But then he must make sure a colleague of his will take over the case and evaluate your request. Everything must take place in accordance with the principle of prevalence of your own will and decision, as required by the practitioner’s code of practice and as laid down in the Law on end of life care.
For some patients the suffering associated with end of life is worse than death itself, and in certain cases it cannot be alleviated. But if your regular physician is himself at pains to assess such a suffering, make sure that he calls upon experts in palliative car for a thorough evaluation.
IV. A healthcare network comprises home care
Each of us must be granted the right to absolute free choice and minimal healthcare organisational constraints regarding the specific place where one intends to live up to his last breath. The Quebec Social Service Integrated Center (Centre intégré de santé et de services sociaux/ CISSS) is the specific organism responsible for healthcare organisation in all regions of the Province of Quebec. The CISSS pools all resources such as hospitals, CHSLD and CLSC in a given territory. If your CISSS has organised a functional palliative healthcare local network, one is assured of a “good life” up to the minute of his death, be it in a palliative healthcare institution, in a CHSLD or at your home.
The end of life is a demanding moment, it will require much organisation and planning together with our family and natural caregivers (proches aidants). The healthcare network must be present so as to facilitate things, not to make them more complicated nor to bring in frustration. Our natural caregivers must be supported and encouraged. Let us stay vigilant and demanding for the care each one of us is to receive in that final stage of his life. In less well organised CISSS, it may turn out to be easier to transfer a medical case to hospital emergency than to organise medical care at the place of residence, be it his CHSLD or his home: this is unacceptable.
Therein lies the weak link of our healthcare network: medical care at home. The available medical resources for it are just grossly lacking or insufficient in many regions of Quebec. How can any of us achieve peace of mind in face of a serious or terminal illness, if no minimal access is guaranteed to a nurse-physician team on a 24/7 by day/week basis?
How can one be told something else than “transfer to emergency service!” if no medical and nursing team is available as a critical situation develops and a swift and strong action is required of the kind that would have been perfectly possible with a competent on-the-spot at home medical team?
Three conditions are required to be satisfied: 1) a well organised palliative care network under the supervision of our local CISSS with integration of expert medical care at home 2) a complete homecare team, comprising medical practitioners, specifically trained in palliative care and available on a 7/24 per day/week basis. 3) a support structure for the network of natural caregivers.
V. Medical care at home has to be integrated in the CISSS palliative care network
Unfortunately, the kind of network we are urging for has not been developed in most of the Province’s CISSS . Yet, as matter of fact, such a mode of functioning costs less than hospital care. Investment in our healthcare network for this palliative service relies mostly upon an expert nursing team in palliative care at home supported by an expert medical team, a social service (already provided for in the CLSC’s), a community pharmacy and a nurse-physician on call system on a 24/7 per day/week basis.
Diligence must be exercised thereafter to ensure various caring teams from the different areas (CLSC, hospitals, palliative care homes and institutions…) are pooled and coordinated so as to respond rapidly to the patient’s and families’ changing needs in adapting to the successive stages of the illness. Quick and safe discharges back home can thus be ensured, for the patient’s and families’ greater satisfaction.
VI. A palliative healthcare team includes medical practitioners
If palliative home care nurses cannot count on several medical practitioners that are competent in palliative care available on a 24/7 per day/week basis, an adequate follow-up at home will be impossible, and as a consequence, any hope of staying at our home up to our last moment is lost. Must we resign ourselves to such obvious neglect by our health system? ABSOLUTELY NOT!
This discussion speaks to an ongoing scarcity of medical personnel trained or specialised in palliative care. Such a statement must be balanced. Despite the new laws regulating first line medical practice, a family doctor is perfectly capable and entitled for such a job, on a mixed practice basis which allows both regular office practice patient care and medical palliative care at home together with the CLSC. However, occasionally, such a physician must rely upon colleagues with a fuller expertise in end of life palliative care as more complex situations may arise. The current scarcity in Quebec of medical personnel, as true experts in palliative care, is undeniably worrisome.
It is up to the Quebec ministry of Health, to the Quebec federation of general practitioners (FMOQ/Fédération des médecins omnipraticiens du Québec ) and to the CISSS medical organisations to exert their responsibility in defining and fostering a favourable environment to include mixed first-line practice including palliative care. Many CISSS are already doing a very good job in this respect.
Let us all demand access to a competent medical practitioner for our end of life care, including home care, and if that is not possible for ourselves at the present moment, let us question our decisionmakers elect as well as our own CISSS.
VII. AS A CONCLUSION
To conclude, wherever we are and live, in a CHSLD, a hospital or at home, a competent palliative care team must be made fully available and without delay whenever our situation requires it or wherever our regular caring team is no longer capable of providing adequate relief. For such a result to be achieved, things must be forced to evolve.
The recent Québec Law on the End of Life care (Loi sur la fin de vie ) provides us with such a formal right to make things evolve. Together, comes the corresponding responsibility and even the consequent obligation for our healthcare network to offer all accessible quality palliative medical care actively promoting the enjoyment of a “good life” up to our last moment. Now that we know what we are entitled to expect, it is incumbent on us to bring any situation we consider inacceptable to our CISSS palliative care management’s attention.
As for discussions with our politicians, let us first remind everyone that the imposition by the Health Ministry of uniform requirements throughout all the CISSS territories would rapidly end up all regional disparities. Through such an approach France has overtaken Quebec by far in providing accessibility to palliative medical care. The badly needed system wide upgrade must be implemented immediately.
Dr Robert Marchand,
September the 12th, 2018
* “Full-range” palliative care is essentially defined as an interdisciplinary team including, on a minimal basis, a nurse, a medical practitioner, a social intervention professional and a pharmacist. To such a team may be added a work therapist, a physiotherapist, a family auxiliary, a spiritual intervention-qualified person, a volunteer and any other kind of interventionist that might better one’s end of life comfort. The nurse-physician tandem must be made available on a 24/7 per day/week basis.
Many thanks to Mr François MivilleDechene for the translation of the Manifesto.
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of Our Little Manifesto : Dying a good death in Quebec.
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