Death rushes towards the guests. No one knows when it will come, but it will come soon, that is certain. The people who live in the pastel yellow building on Tannhauserstrabe in Wiehl, North Rhine-Westphalia, are considered out of treatment, their life expectancy is low. Some stay in the hospice for a few weeks, others only a few days or hours, and most die in the first week of their stay. But today the red mourning candle at the entrance to the Johannes-Hospiz Oberberg is not burning, the open page in the memory book, in which relatives paste photos of the deceased and give them last wishes for their journey, is empty. Still.
There is no internationally uniform definition of when dying begins. From a clinical point of view, the last three to seven days of life are defined in the literature as the dying phase. Death often announces itself: The sick become weak, mobility and mental capacity decrease, they hardly eat or drink, the eyes seem sunken, breathing changes. A rattling sound can often be heard, the sound of approaching death. Only when the coordinating activity of the vital organs collapses and the brain is no longer supplied with sugar and oxygen, does the heart and respiratory activity cease. Predicting the point of death is impossible even for experienced physicians. There are people who seem to wait until relatives have arrived from far away, others die as soon as the relatives leave the room, as if they would rather be alone at the moment of death.
Birth, life, death – nature makes no exceptions. The wish to die in one’s own bed, which almost everyone cherishes, is not even granted to a third of the population. More than 40 percent of people die in hospitals, almost a quarter in nursing homes. Death is no longer a taboo: In Germany, around 80,000 volunteers are involved in the hospice movement, and the debate about assisted suicide has been filling the gazettes and talk shows for months now. The fear of an agonizing death, of suffering and loss of control drives people around. Quality of life or prolongation of life? Stay or be allowed to go? Talking about it in theory is one thing – experiencing death is another. "Caregivers, physicians and pastoral caregivers also always leave the bed as living people," says Heiner Melching, executive director of the German Society for Palliative Medicine (DGP), "they survive death." Better the others die than oneself or the closest relatives. The thought, as unempathetic as it may sound, is a shield that keeps one’s fear at bay. The extinction of one’s own ego is too final. Too much terror of what can come with the dying process: Fear, pain, shortness of breath, nausea. There is no first-class death.
Palliative medicine, which has developed in Germany over the past 30 years from deficits in the care of the seriously ill and dying, can alleviate many symptoms in the last weeks of life, although it cannot always take them away. The World Health Organization defines it as "active, holistic treatment of patients with progressive, advanced disease and limited life expectancy at the time when the disease is no longer responsive to curative treatment and the management of pain, other disease symptoms, psychological, social and spiritual problems is the highest priority". In the 1980s, many were critical of palliative care, but that has changed, "although there are still doctors who dismiss it as pill-palle medicine," says Heiner Melching. "There is also a bit of envy: the staffing situation and equipment in this area are often good, and many wards are supported by strong support associations." Most are small units and houses, on average they have seven to nine beds.
Better, but not good enough
"If there are eight places in the palliative care unit in a hospital with 800 beds, these are already beacons," says Melching. "We urgently need to reach more people."Of the approximately 2,000 hospitals nationwide, about 15 percent have palliative care units, and the trend is upward. These wards are not hospices, they help in acute crisis situations. The patient should be transferred as soon as possible with a good care concept – to home or a hospice. The costs, which vary from region to region and average 271 euros per bed per day, are covered to 90 percent by health and long-term care insurers; the hospices have to raise the rest themselves from donations.
According to the DGP, there are considerable differences in the care of palliative patients, both between the German states and between rural and urban regions. "Care in the cities is good, but a lot still needs to happen in the outpatient sector, especially in rural areas, even though the number of outpatient hospice and palliative services has tripled since 1996," Melching says. In principle, everyone with statutory health insurance is entitled to hospice services. The 2007 healthcare reform also enables him to receive specialized outpatient palliative care (SAPV) – palliative care at home. So-called SAPV teams, which support family doctors in providing care at home, are made up of doctors, nurses and coordinators. According to the guidelines, those who suffer from an incurable, progressive disease that has progressed to such an extent that life expectancy is limited, and who also require particularly complex care, are entitled to this treatment. Who is sick enough is decided first by the doctor and then by the insurers. But they don’t always agree. There are also white spots on the map – SAPV does not yet cover the whole country.
According to the DGP, psychosocial care for patients and their relatives should also be further developed, because it is above all the psyche that causes the affected persons problems at the end of life. The fear of suffocation and dying of thirst is particularly high. "These fears are also present among doctors and nursing staff," writes Gian Domenico -Borasio, holder of the chair of palliative medicine at the University of Lausanne and lecturer in palliative medicine at the Technical University of Munich, in his book "On Dying". This is fatal, because "the well-meaning measures to avoid dying of thirst and suffocation in the dying phase really bring out precisely those agonizing symptoms."Doctors often try to make breathing easier by administering oxygen through nasal cannulae. A measure that is supposed to help, in fact it dries out the mucous membranes of the mouth, giving rise to the agonizing feeling of thirst in the first place. In addition, she says, giving oxygen to dying patients does little good: flattening of breathing is a sign of dying, not respiratory distress.
Effective, but not sufficiently known
The fact that experts do not always agree on the right approach at the end of life unsettles those affected and their relatives. Which treatment makes sense, which painkiller is recommended? Morphine – yes or no? The opiate that relieves pain is always the -focus of debate. According to Borasio, fears that the administration of morphine could trigger addiction in the seriously ill or hasten their death have long been disproved. "Today, they must no longer be a reason for withholding effective therapy from patients."
But even the best palliative care can’t give everyone an easy death. "There are people who die horrible deaths or die in fear," says Anke Bidner, head of the Malteser Hospice Service in Wiehl/Numbrecht, which provides the -volunteer hospice workers in the Johannes Hospice Oberberg. "The pain of a young mother who has to leave her young children behind cannot be taken away by painkillers."In the hospice in Wiehl, people are cared for from the age of 21. Year of life recorded. On average, they are 63 years old, 96 percent have tumor diseases. "Death and pain are part of our lives. I accept that, even if there are days when it’s easier for me than on others," says Bidner, who previously worked in an intensive care unit for 15 years.
Ten nursing staff work in the hospice, four qualified palliative doctors are on standby if needed, plus more than 50 Malteser volunteers, kitchen and administrative staff, a priest, a chaplain, a janitor. Each year, they accompany about 150 people on the last stretch of their life’s journey. "We are a team," says Bidner. "No one has to be the sole contact. We exchange ideas and receive supervision." That gives strength. But Bidner also says: "The guests don’t come to our house to die, but to live."
In the spacious living room, the heart of the hospice, Jurgen Klimesch *, 56 years old, actor, married, two children, sits on a red sofa. He has been living here for nine days. The diagnosis: terminal pancreatic cancer. Next to him is an infusion syringe pump that silently pumps morphine into his emaciated body. His wife sits on the other side. Their knees touch, their hands gently clasp each other. "I made a conscious decision to go into a hospice," says Klimesch. "Our home should remain unencumbered by death and illness for the children."
Like so many seriously ill people, he has also been through an odyssey. "I was trapped in the clinic," he says, looking through his rimless glasses with eyes wet with tears. "I only knew increases in suffering and pain." Now, he says, he has arrived "in the right place" and has been "finally pain-free" for several days. He talks openly about death, also with his wife. But fighting back tears takes strength. Again and again he interrupts his sentences, sobs, catches his breath, tenses his body, continues to speak. "In the end, everything becomes so unimportant. My wife, my brother, my best friend – these three people are enough for me."
Important, but not economical
There is no set daily routine in the hospice, no wake-up times, no meal times, no visiting times. "The desire for everyday life is great," says Anke Bidner. The guests decide for themselves. They can smoke and drink alcohol in their room, bring pets, listen to loud music or get into the bathtub with cheese bites and a glass of red wine. Preserving quality of life. "One guest had a craving for plum cake with cream, but could no longer swallow," recalls the powerfully built woman with red hair. "We ultimately fed him the plum cake via the feeding tube. And he was happy." One guest took his beloved motorcycle to his room, another went once again to the sea, a couple slept under the stars, another got married in the hospice. "You can’t reduce dying people to their dying," says Anke Bidner. Every moment of happiness counts.
In fact, there is as much laughter as crying in the house. Humor takes the terror out of the situation. And he loosens up. Because only very few people find it easy to talk about their own death or to express last wishes. Relatives must also be kept in mind, their care is also one of the tasks of the hospice team. "We invest about 50 percent of our working time in our relatives. They often have a care marathon behind them, need relief and need people they can talk to."
Without conversations, grief can make you sick. But very many people remain silent at the end. Out of consideration. They mean well, don’t want to put the other person through any more, want to protect each other. So much remains unspoken.
There is little time for consolation in the daily medical routine, and this applies to wards as well as to homes or outpatient care. "As long as a general practitioner is paid an average of only about 18 euros for a home visit, one should not be surprised if only extremely committed and idealistic physicians are willing to take on the physical, emotional and logistical strains of good home care for the dying," Borasio writes. In clinics, the situation is even more difficult, especially when they have been privatized and are supposed to make a profit. "For hospitals, palliative care units are not economically interesting, they only help the image," explains Heiner Melching. "Only expensive patients generate revenue. An oncologist is not paid to talk – but time, encouragement and care are so important in the last phase of life."
In Wiehl, the care ratio is one to one. The staff wear everyday clothes, the kitchen looks like something from a country house catalog, the fireplace crackles in the living room on cold days. The facility does justice to the term hospice, which comes from the Latin "hospitium": the inn.
A guest room is currently being renovated, the smell of cold smoke still hangs in the air. The cigarette smoke of the last resident ate into the walls over weeks. She stayed in the hospice for a long time, longer than many other residents. "Our guests are coming to us later and later," says Anke Bidner, "unfortunately." Sometimes there is hardly time left to build a bond. People hope, put off doctor’s visits, wait a long time before deciding to move into the hospice. There, after all, the others die, not they themselves.
* Name changed by the editors
This text comes from our Corporate Publishing editorial team.