In a hospital service Treatment of pain and help for the dying. Doctor NATALI : palliative care in a pneumatology unit FRANCE CATHOLIQUE N° 2657 of 11 September 1998

- Doctor Natali(1), palliative care is at the heart of the lung unit which you co-direct. Does this choice of such a unit being integrated in the internal medicine service seem to you to be the best suited ?

Palliative treatment is organised in two ways. Autonomous units are specifically devoted to the care of the terminally ill. Each one having 5 to 20 beds, they count a total of about 500 beds in France, and handle 2% of annual deaths. The second solution is based on mobile nursing teams. Called from the different hospital services and open to external consultations, they offer their specialised know-how and their psychological support.

By obligation, we have developed a third way in the pneumatology service(2) : to improve means of bringing comfort to the terminally ill, in continuation with curative care. This obligation is apparent in all the high mortality units (cancerology, pneumatology, haematology) as a result of a twofold constraint : responsability for seriously ill patients, and insufficient numbers of medical staff. The disadvantages are enormous : in an autonomous unit, we would have more staff and more time to care for each patient ; the medical team is heterogeneous and points of view, expressed or not, are sometimes very divergent. But this formula has its good points. High technicity gives the freedom to have recourse to it or not. The same team lives through all the ups and downs of the evolution of the cancer with the patient without interruption and together with his or her family. For each patient this involves accompanying him or her for a period of 12 to 14 months ; this demands immense availability, through the joys and sorrows. All the more as the carers often live in a mirror effect what the cancer sufferer is experiencing, or with the person with lung function failure and his dear ones. Finally, the nurses in the unit have a university qualification in palliative care ; there is a full time psychologist working in the unit : the palliative approach is progressing.

Insufficiently controlled sedation can cause death.

- Some doctors do not hesitate to express their distaste for the accompaniment of the terminally ill, being of the opinion that their calling is before all else, to cure. How do you feel in this regard ?

This idea has never occurred to me. My first internships in the hospital services of Lyons were in geriatrics ; then in haemato-cancerology. In the case of lung cancer, from the first assessment, in a few days, we know if we can cure the patient or not. Therefore, accompanying such a patient requires patience, truth and fidelity, as well as a calm hope that one learns in the constant search to alleviate the most difficult physical and psychological symptoms. It is up to us to learn all the time as we go along !

- Every palliative care unit is confronted with the question of euthanasia, especially when the attempts to alleviate suffering may shorten life. How do you see this borderline situation ?

At the present moment euthanasia is understood as any gesture that VOLUNTARILY shortens the life of a person, with a " humanitarian " aim, in order to spare him suffering considered to be unbearable, and this without the patient or the family requesting it. The terms active or passive euthanasia are obsolete. The request for euthanasia arises when the physical and psychological restrictions have made the patient the " whipping boy " (in French, the " souffre-douleur ") of the illness. These two words side by side (pain-bearer), express the depth of the humiliation experienced. Pain is the most easily controllable symptom. Other complications lead to a person being bedridden : muscular atrophy, extreme breathlessness.

It happens that, in spite of morphine and well conducted treatment, we are obliged at times to induce sleep in the patient.

This is a difficult decision requiring dialogue and debate. Poorly controlled sedation can hasten death. The nurse and the doctor must not be alone, to avoid being overcome by the suffering of the other. Induced sleep has dosage rules and is not a telephonic prescription.

It is a real accomplishment in a service to develop terminal care in continuity with curative care.

- The role played by voluntary workers in the palliative care units is often a source of admiration. How do you see their role ?

The voluntary workers of the Association for the development of Palliative Care (ASP) have been coming to the lung unit of the Percy hospital since January 1986. They are now also in haematology. Their contribution is considerable. In a sense, unaware as regards to the disease, they go to work on the level of listening, talking, friendship.

They offer a fantastic resource for the patient and as much, sometimes more, for the family. For us, medical staff also, they have a soothing influence. It is always a joy to feel a presence from outside the hospital, not involved in the still too closed discussions about care.

- In the treatment of pain, the Anglo-Saxons have for a long time been ahead of us. What difference of approach do you find between the French and the English ?

In France the option is probably more curative. The teams treating cancer propose 3rd and even 4th line chemotherapy protocols, in the case of disease relapse. Some of these products are very expensive ; three injections can cost - 20 000FF - the cost of a programmable morphine pump with auto-administrable doses. It is necessary to establish priority options for the equipment of a unit if one wants serious pain control. It is a delicate matter deciding when to stop the chemotherapy. Both clinical experience and consideration of the wishes of the patient are essential.

Even as regards the care of the terminally ill, the English approach seems to me to be more pragmatic, in a way more " nursing " oriented. At the Saint Christopher's Hospice where palliative care was started at the initiative of Lady Cicely Saunders, there is an atmosphere of great serenity, without the persuit of further examinations and intravenous drips. Many rooms have two, even four beds. In France the " single room " is quasi-compulsory for the dying. Associations play a great role in the United Kingdom. There are places for ecumenical prayer. Accompaniment is more community oriented.

Outside of autonomous palliative care units, we are still far from such practises in France. But the spirit of palliative care is spreading progressively in all high mortality medical services. The creation of sitting-room facilities for families is the first step towards warmly receiving them. I do not think we are so far behind in comparison with Anglo-Saxon countries, but rather that we are making complementary progress.

Data collated by Denis SOLIGNAC