Recently, in Bohemia and Moravia, we celebrated World Hospice Day. On September 9, most media outlets used the term hospice in every context. They sought to draw the public's attention to the fact that our hospices are not the invention of a few enthusiastic altruists, but rather part of a globally recognized and respected hospice movement. How did it actually come about? "A doctor can cure sometimes, relieve often, comfort always" — this famous statement by Dr. Hutchinson, made over a hundred years ago, will always hold true, no matter how great the progress of medical science. Its achievements in recent decades have been remarkable, and the entire civilized world rightly rejoices in them. However, every coin has two sides. Previously unimaginable possibilities inspire not only admiration but also concern. Healthcare payers ask: Who will pay for all this?

The patient fears dysthanasia (= prolonging death) and asks: Will my doctor allow me to leave life naturally when my time comes? And in different parts of the world, the potential patient reacts to this threat differently. In the United States, people carry a card with the letters DNR, meaning do not resuscitate! In the Netherlands, a law on the impunity of euthanasia was pushed through, while in Great Britain the hospice movement arose in the 1960s, from where it quickly spread throughout the world and, after the fall of the Iron Curtain, to our country as well.

The dying no longer want to be patients, they want to be people! The needs of the seriously ill are the same all over the world — biological, mental, social, and spiritual — the difference lies only in whether and how they are or are not met. This depends to a large extent on local conditions. The difference in conditions does not lie solely in whether a country is poor or rich. More factors are at play — the healthcare system and its funding, the level of education and training of doctors and healthcare workers, their motivation, the level of interpersonal relationships, etc. Our country is relatively poor compared to other EU states, and moreover, our society has not yet come close to recovering from the unfortunate 40-year devastation. A pessimist would conclude from all this that nothing can be done here. I would venture to disagree. Our country is rich, but in a different way. Although the funding of inpatient hospice operations has still not been satisfactorily resolved at a systemic level, to the great satisfaction of patients and their families, fourteen of them operate in Bohemia and Moravia. Particularly remarkable is the fact that they arose from the grassroots, harnessing an immensely rare and valuable human potential. That is precisely where the wealth I have in mind lies. At a time when pragmatically oriented doctors and healthcare workers are leaving in droves to work abroad, others here, without adequate financial security, are striving to improve the situation of the seriously ill and dying, whose time to live is significantly limited. The patient's battle with time is relentless, yet at the same time inspiring and therefore enriching for the caring professionals and for their loved ones. The fact that hospices in our country arose through grassroots initiative does not, however, mean that this is something amateurish, based on mere enthusiasm. All of their founders drew on the experience of foreign hospices, mostly British, and what we particularly value — from the very beginning they were morally encouraged and professionally supported by our leading experts in palliative medicine.

It all began back in 1990. Although the state still had a monopoly on healthcare at the time, we tried, under the auspices of the Czech Red Cross (ČKCH) with a handful of the first nurses, to address the dismal situation of the terminally ill through what we now call a mobile hospice. It seemed to us the relatively easiest, certainly the most in demand, and therefore the most needed and purposeful approach. It was quite a pleasant adventure — each month the nurses returned their taxed salary to our account in the form of a donation, and so it went for a whole year, until the Ministry of Health legalized our activity by permitting a two-year experiment and providing a subsidy. Thanks to it, nearly fifty similar centers were established across the country in a short time. However, our initial enthusiasm was dampened by the daily painful experience of the objective limits of home hospice care. We therefore had great expectations of help from an experienced American hospice nurse, Florence, who worked with us in the field for a full six months. But she returned home with the assessment that in our Czech conditions, which are significantly different from hers, we urgently needed inpatient facilities, especially since what they call "nursing houses" do not exist here. Such facilities once operated here, but because they employed religious sisters, both the houses and the sisters were shut down in the 1950s — without replacement to this day. That was the reason why, in 1993, with the financial co-participation of the state, we began building inpatient hospices. Not as a replacement for home care, but as its necessary complement. A mobile hospice without an inpatient facility and an inpatient hospice without a mobile one are like one lung without the other.

Patients are admitted to an inpatient hospice when home care is not possible or insufficient. Most patients in inpatient hospices require care comparable to that of an acute ward, some even require enhanced care and observation typical of an ICU. However, an inpatient hospice is always a substitute environment, replacing home, and therefore must be architecturally arranged to remind the patient and their family of a home environment as much as possible and to provide them with maximum privacy and flexibility in daily routine. To such an extent, this can practically never be achieved in a hospital setting. In the spring of 1993, the civic association Ecce Homo — Association for the Support of Home Care and the Hospice Movement was founded. Even then, it set a goal that it does not need to change today:

  1. to start talking openly about dying and death, and above all to think about them;
  2. to help build the first Czech hospice and thereby demonstrate that when there is a will, everything is possible;
  3. to pass on the experience gained from the hospice (lectures, seminars, internships, etc.);
  4. a distant goal: TO PROMOTE THE IDEA OF HOSPICE BEYOND THE HOSPICE BUILDINGS, EVERYWHERE WHERE PEOPLE DIE.

If we look in more detail at the fulfillment of these points after eighteen years, we see that the hospice movement in the Czech Republic is no longer at the beginning, but it is still far from its goal. Ad 1) The topic of dying and death is no longer as great a taboo in our society as it was then, but for many it remains a taboo. It is a long-distance run. Ad 2) The first Czech hospice was opened on December 8, 1995 — Hospic Anežky České in Červený Kostelec, followed by others. With few exceptions, all were established with approximately 60 to 70% financial co-participation of the state. The remaining 30 to 40% was obtained from non-state sources, from donors and sponsors. It is therefore a contribution of the citizens — something like "a nation for itself". State subsidies were allocated partly with regard to the personnel and material readiness of the project, and partly with regard to the uniformity of the emerging network of inpatient hospices. Currently, only three regions of the Czech Republic lack an inpatient hospice — Liberec, Karlovy Vary, and Vysočina. Ad 3) In the field of education, the hospice movement has done a substantial amount of work. Not only in the form of lectures, seminars, internships, but also through the education of tens of thousands of family members of its patients.

The distant goal is clearly defined — it is the maximum availability and quality of palliative care! Although a long way still remains to achieve it, the tangible experience of both the lay and professional public with hospices is already bearing fruit. The idea of hospice is penetrating at least some healthcare facilities, the approach to patients is improving, daily routines are being relaxed within the bounds of possibility for the benefit of patients, and communication with the sick is more open and truthful — at least in some places… To more easily achieve our stated goal, we joined forces in 2005 and founded the Association of Providers of Hospice Palliative Care (APHPP). It works as a team and purposefully, so much has already been achieved:

  • After 10 years, the term inpatient hospice was finally enshrined in law; after 11 years, it received its own code (the so-called care day) in the list of medical procedures; and for three years now, our law has also recognized the mobile hospice, defined by a somewhat awkwardly long name: "palliative care provided to insured persons in a terminal condition, in their own social environment". What remains is to systematically resolve its funding and its "networking" into our healthcare system, on which APHPP is working intensively.
  • To prevent hospices from being created in a "Potemkin village" style, APHPP, in cooperation with the Ministry of Health, developed standards, including the determination of minimum indispensable personnel and material equipment.
  • APHPP also participates in the education and training of both the lay and professional public. The aim is to improve the availability and quality of palliative care outside hospice buildings, everywhere where people die and will always die — in hospitals, long-term care facilities, institutions, at home under the care of general practitioners, etc.

A small addition in conclusion: In the hospice movement, we are simultaneously addressing another major problem and trying to preventively counter the far-reaching consequences that would follow if advocates of legalizing impunity for euthanasia achieved their goal before we achieve ours. The threat of dysthanasia, which I mentioned at the beginning, is real and frightens many people. Unless a person is completely callous, a terminally ill person inevitably evokes pity and a desire to somehow help. Their subsequent thinking then takes one direction or another, depending on whether it is sentimental, soulless pity, or creative pity, true compassion for the patient. Sentimental pity is of no use to the patient and, in extreme cases, leads to considerations of killing the patient, to considerations of euthanasia. Creative pity is capable of full commitment and sometimes even superhuman sacrifice. If you do not believe it, come and see for yourself at any of our hospices.

MUDr. Marie Svatošová president of APHPP

This article was published in the journal Odborný časopis Sociální služby - November 2010. Issue theme: "Week of Social Services of the Czech Republic"