Palliative care: a new culture to defend the dignity of every person

Opening speech of Archbishop Paglia - Palliative Care International Congress - Rome

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Greetings to the PAL-LIFE Conference from Archbishop Vincenzo Paglia, President of the Pontifical Academy of Life - Rome, February 28, 2018

            I would like to welcome all who are participating in this International Conference, “Palliative Care:  Everywhere and by Everyone.  Palliative Care in Every Region.  Palliative Care in Every Religion or Belief.”  The Pontifical Academy for Life is pleased to sponsor our Conference as part of its PAL-LIFE Project, whose goal is the spread and development of palliative care in the several areas of our planet.

            Dispelling a misunderstanding: “palliative” is not the same as “ineffective.”

            The Pontifical Academy for Life has studied this question in the past; but, precisely because of its importance, we felt it necessary to follow up with a further reflective and creative exercise.  We are convinced that a real change of perspective is needed to overcome a widespread conceptual and linguistic misunderstanding that affects the expression “palliative care.”  The phrase needs to be put into better focus within the larger world of medicine, which today has powerful and effective tools to combat a wide range of diseases and significantly improve health conditions worldwide.  Notable advances in scientific knowledge have led contemporary medicine to consider physical healing its sole purpose, and to risk paying more attention to its own struggle against disease than to the patient and his or her needs as a whole person.  We must never forget that every therapeutic effort (“cure”) has meaning only in the context of that deep personal relationship that is an integral part of “caring for” the sick.  Thus, it is a mistake to consider that medicine has necessarily failed when a patient does not recover.  Among the many errors that result from that approach is a reliance on treatments that are excessive or not indicated and that result in disproportionate suffering.  In short, doing everything possible (if this means using all available modalities always and no matter what) can mean doing too much (that is, an excess that harms the patient).  Doing more does not always mean doing better.

            There is another risk that must be avoided:  abandoning the patient as soon as a cure is no longer possible.  Even if we can not cure, we can still alleviate pain and suffering and continue to care for the patient. The “incurable” patient is never “beyond care.”  Without this conviction, the medical profession can easily fall into “therapeutic abandonment” (“since no cure is available, there is nothing worth doing”) or in a slide toward euthanasia (“better to end it all”).  Palliative care, in opposing these two risks, helps the medical profession rediscover its humanistic vocation, which is  to defend the dignity of every person in whatever condition that person might be in.  Experience confirms that behind every request for euthanasia or assisted suicide there are always two fears: fear of abandonment and fear of pain.  Here it is important to dispel a misunderstanding, present in certain languages, that considers “palliative care” a euphemism for “euthanasia.”  In reality, euthanasia and assisted suicide form no part palliative care.

            On the contrary, palliative care is a way to reduce the number of requests for euthanasia, and to show how medical personnel, family and friends are united in providing the patient with accompaniment that is a loving consolation.  And we must make it clear that, contrary to popular opinion, palliative care does not cease when no cure is possible.  In fact, there is always room for palliative care, at least at the level of principle and technique.  Think, for example, of the combination of pain management and therapeutically powerful personal accompaniment.  We need a new medical culture, one that sees medical interventions and palliative care as two sides of the same coin.  Cure and palliative care should be integrated with each other and collaborative.  The notion that governs both is, as I mentioned earlier, “taking care of” the patient, even in a home environment.  This is how to fight the fairly widespread misunderstanding that "palliative" means "useless" and "ineffective."  Unfortunately, the persistence of this confusion explains the resistance to palliative care in public opinion, even when its importance is recognized.  There might even be appropriate laws that govern the question, but that, because of this ambiguity are unknown or not enforced. Greater public awareness of palliative care is needed urgently, in political as well as medical contexts, and I believe that further research into the palliative care dimension of medical science is needed as well.

            Palliative care as a collaborative effort

            I am convinced, in fact, that medicine, in the sense of "taking care" of the patient needs a new cultural perspective that highlights the centrality of the human person in the face of the great challenges posed by the development of science and technology.  Every man, every woman, in whatever condition they find themselves, have a right to be cared for in their need.  And each of us needs to rediscover our duty of reciprocal attention, with the consequent obligation to care for one another—in body and in spirit.  Hence the urgency of promoting a culture of accompaniment that alone is able to counteract the individualistic narcissism that is increasingly weakening, and even corrupting, the fabric of our societies.  I believe that palliative care—by reason of the way it unites medical personnel from different fields, family and friends around the patient—performs a greatly humanitarian service but at the same time assists in rebuilding a culture of solidarity that renders globalization truly human.  For this reason, I am hoping for a broad alliance among men and women of different cultures and faiths that will promote united, bold and creative action in order to spread the acceptance of palliative care throughout the world.  This is the purpose of our meeting.  In this context, as a Christian, I see in the Gospel parable of the Good Samaritan an ideal icon that describes the vocation of palliative care very well.  In the parable it is the strength of compassion that pushes the Samaritan to stop beside that half-dead man, give him first aid, load him on his donkey, take him to the inn, entrust him to the innkeeper, and guarantee the payment of his expenses.  It is a story from the Gospel, but its meaning is universal.  It challenges every indifference, breaks down every barrier, rediscovers the radical fraternity that unites us, beyond all our differences.  I believe that the call for fraternity in this parable is universal.  It makes us all responsible for the weakest, for those who have the most need for accompaniment.  Likewise, the palliative care movement is a part of this movement of compassion and of accompaniment.  It makes us rediscover that human fraternity that is called upon particularly when we are facing the last moments of earthly life.

            I ask you—still speaking as a Christian, but in a way that I am sure resonates with other religious and humanistic perspectives—whether we should give a new name to the seventh Corporal Work of Mercy.  The first six, as we know, are an invitation to give food, drink, dress those who are naked, welcome those who are foreigners, visit the sick and prisoners.  The last invites us to “bury the dead.”  Should we not change the phrase to “accompany the dying”?  The example of Saint Teresa of Calcutta is particularly authoritative, and palliative care is a central part of her same religious and humanistic tradition.

            The PAL-LIFE Project

            In closing, permit me a word about the PAL-LIFE Project.  During the Audience granted to the participants in the XXII General Assembly of the Pontifical Academy for Life, in the context of which the workshop "Assisting the Elderly and Palliative Care" was organized, Pope Francis said the following: “I appreciate your scientific and cultural commitment  to ensuring that palliative care can be available to all who need it.  I encourage professionals and students to specialize in this form of assistance, which has no less value for the fact that it does not save lives.  Palliative care creates something equally important: it gives dignity to the person. I urge all who, in various capacities, are involved in palliative care to put this commitment into practice by keeping intact a spirit of service and remembering that all medical knowledge is truly a science, in its noblest sense of the word, only if it promotes human good, a good that is never achieved ‘against’ human life and dignity.  It is the capacity for service to the life and dignity of the sick, the elderly, that measures the true progress of medicine and of society as a whole.  I repeat the appeal of St. John Paul II: "Respect, defend, love and serve life, every human life!  Only on this path will you find justice, development, true freedom, peace and happiness!’”

             Desiring to follow the words of the Holy Father, in March, 2017, the Pontifical Academy for Life launched the PAL-LIFE Project, establishing an international Study Group to promote the development and spread of palliative care around the world and to promote a culture of accompaniment of the weak and of those who are facing the last days of their earthly lives.  Through this project, the Academy hopes to promote a greater sensitivity in Christian communities and civil society to the development of palliative care everywhere.  The Academy’s wish is to interact with other academic institutions and scientific organizations to promote palliative care and to work with the various stakeholders to carry out concrete initiatives.  From March, 2017 until today several activities have been brought to completion, including cooperation with the "Pallium India" Association (currently headed by Dr. M.R. Rajagopal) and the Catholic Health Association of India. Our entire Group of Experts has also worked on the drafting of a "White Paper for Global Palliative Care Advocacy," which I would like to present officially at the end of this Conference.  We would also hope to participate in the work of international bodies, in particular the United Nations, working closely with Liliana De Lima and Katherine Pettus of the International Association of Hospice and Palliative Care.  We also want to start other Working Groups concerned with deepening spiritual care in the context of palliative care, and a seminar on this subject was held last August with the guidance of Prof. Christina Puchalski.  Finally, of particular importance was the Conference on End of Life issues organized last November in partnership with the European Region of the World Medical Association.  In the light of the shared humanist roots that nourish our work, I am sure that during these days we will work together effectively, growing in our shared knowledge, and I wish all of you a very productive experience.