Palliative medicine is important when the disease has progressed so far that it can no longer be cured. In this case, palliative treatment can still do a great deal for those affected, so that they will be well in the time they have left to live.
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What is palliative care?
The task of palliative medicine is to preserve the life and quality of life of cancer patients for as long as possible.
In Germany, more and more people are suffering from cancer. The Robert Koch Institute in Berlin currently estimates the number of new cases at around 510.000 per year. Thanks to advances in cancer research and medicine, half of those affected can now be permanently cured. However, many cancer patients still suffer relapses in the course of their disease and have to cope with complications. Often they then have to learn that their disease can no longer be cured. In this situation, the attending physicians, in consultation with the patient, will do everything possible to preserve his or her life for as long as possible, while at the same time maintaining his or her quality of life at as high a level as possible.
Every affected person, who is so inevitably confronted with the finiteness of his life, will have the wish to be able to arrange the last weeks and months as well as possible with as little discomfort as possible and to be able to do the things that are important to him. He is supported in this task by his relatives as well as by the attending physicians, who need a lot of experience for this task. Doctors and non-medical staff working in palliative medicine or in hospice services have this experience in a special way.
It has been shown that the earliest possible inclusion of palliative medicine in the treatment concept against the tumor disease (surgery, radiation, chemotherapy, other therapeutic procedures) can be important for the affected person in two ways. On the one hand, studies have shown that the quality of life and well-being of patients receiving oncological and concomitant palliative care improve significantly. On the other hand, it is possible for patients to survive longer even though they have been treated with a more moderate palliative chemotherapy or radiation therapy.
In recent years, both inpatient and outpatient general and specialized palliative care have become more widespread in Germany. This meets the frequently expressed wish of many patients to spend the last time of life within their own four walls and surrounded by their relatives.
Background to palliative medicine
The word palliative medicine has its origins in Latin: pallium is called a cloak, and like a cloak, all palliative care measures are intended to protect the severely ill patient.
In more scientific terms, the World Health Organization (WHO) defines palliative care as the "active and holistic treatment of patients suffering from a progressive disease with a limited life expectancy. The highest priority is given to controlling the symptoms of the disease and providing psychological, social and pastoral care."
This 1990 definition was adapted by WHO in 2002 as follows: Palliative care is also "an approach to improving the quality of life of patients and their families facing problems associated with life-threatening illness, through prevention and relief of suffering, early recognition, assessment and treatment of pain, and other distressing complaints of a physical, psychosocial and spiritual nature."
The definition of palliative care shows that palliative care is not limited to people with tumors. Nevertheless, most of the patients currently requiring palliative care in Germany suffer from cancer. Besides the term Palliative Care In this context, you may also have heard the term "care" palliative therapy meets.
Palliative therapy means tumor-specific treatment (palliative chemotherapy, immunotherapy or therapy with targeted drugs, radiotherapy or even surgery) in the palliative situation, i.e. in a situation in which a cure is no longer possible.
For a long time, Germany lagged behind in international comparison as far as palliative care services were concerned. Palliative medicine was still a taboo subject in Germany at the beginning of the 1980s. In 1983, German Cancer Aid provided the impetus to close this gap in the care of cancer patients: It founded Germany’s first palliative care unit in Cologne and subsequently promoted the establishment of numerous other units and hospices throughout Germany.
With the establishment of academies for palliative medicine, professorships and the funding of research projects in this field, German Cancer Aid has played a major role in paving the way for comprehensive palliative care in Germany. In order to achieve this goal, health policy has also responded in the meantime: with the Hospice and Palliative Act passed in 2015 and with the signing of a national strategy for the care of seriously ill and dying people in October 2016.
Palliative care: what are its goals?
One of the goals of palliative care is to preserve the quality of life of a patient. It always focuses on the whole person suffering from an illness, rather than the illness alone. Even if a disease can no longer be cured and life expectancy is limited, a great deal can still be done for those affected to ensure that they are well off in the time they have left to live.
Notice: If you need palliative care yourself, know that its primary goal is to promote your personal quality of life, that is, to help you achieve what is important to you.
First of all, of course, to reduce the physical discomfort you are now suffering from. Effective and consistent treatment of distressing symptoms is an important prerequisite for a good quality of life in the face of an incurable and progressive disease. Furthermore, however, it is also about meeting your emotional and spiritual needs in this final phase of your life, as well as helping you to cope with any social problems you may have, and providing you with advice.
In the context of cancer, the goal of palliative therapy is to prolong life with the tumor disease or to avoid expected complications. One example: a tumor pressing on the esophagus is surgically removed only partially to relieve discomfort caused by it. This does not eliminate the underlying disease.
Important: Many patients now live with their tumors for a long time with a good quality of life. Thanks to modern therapy methods, the palliative period of life has become increasingly longer.
In addition, supportive treatment (Supportive therapy) can be understood as a palliative medical measure. Supportive therapy means preventing or eliminating side effects or complications that may occur as a result of cancer treatment. Typical examples are the treatment of nausea and vomiting after chemotherapy or a fungal infection after radiation treatment.
You are looking for more information? Palliative medicine
Further information on palliative therapy can also be found in the patient guideline "Palliative care for patients with incurable cancer".
Palliative care in a hospice
Palliative care in a hospice is more broadly about the goal of alleviating the suffering of the seriously ill, allowing them to remain in familiar surroundings, and also assisting their families.
In connection with seriously ill and dying people, you have probably heard the term Hospice belongs. The word is derived from the Latin hospitium, which means hostel and is also reflected in the word Hospital found again. It was originally an ecclesiastical or monastic boarding house for the needy, the stranger, or the sick.
In a narrower sense, a hospice today is understood to be the inpatient realization of the hospice idea in a building with its own infrastructure, but without in-house doctors. Hospices care for seriously ill patients with an incurable, progressive disease and limited life expectancy, as well as dying people for whom inpatient treatment in a hospital is not necessary but care at home is not possible.
Citation: "What the dying person needs more than anything is for us to have understanding and respect for their person. Perhaps we should talk less to the dying about death and sadness and instead do infinitely more to remind them of life." (Dr. Stein Husebo, Chief of the Department of Anesthesia and Intensive Care Medicine, University of Bergen, Norway)
In the hospice, the focus of palliative care is on monitoring the symptoms of the disease and alleviating discomfort. In addition, the service provides nursing, psychosocial, and spiritual care for the patient. The staff in a hospice consists of full-time professionally trained as well as voluntary employees, who are prepared for their tasks in special so-called qualification courses. Medical care is provided by physicians trained in palliative medicine.
Inpatient and outpatient palliative care services
Inpatient hospice facilities are complemented by outpatient palliative care services. Outpatient hospice services support the sick and their relatives with everyday tasks and activities, provide psychosocial counseling, accompany the dying and their relatives, and help the bereaved cope with their grief after the death of the sick person. Furthermore, they also inform the public about the hospice idea.
An outpatient hospice service consists of at least ten volunteers who have attended empowerment courses and are usually available four hours a week at fixed times. A full-time, professionally qualified specialist manages the service and coordinates the assignments.
If you wish to receive palliative care at the end of your life in your own home, an outpatient palliative care service takes over the palliative care in close coordination with the attending physicians and is also available for the so-called basic care – this includes, for example, personal hygiene, dressing and undressing, positioning the patient – if required. Relatives receive support through these services, especially for palliative care measures.
Specialized outpatient palliative care (SAPV)
In addition, people suffering from a non-curable cancer disease with severe symptoms are entitled to so-called specialized outpatient palliative care (SAPV) in their homes. This service is provided by a multi-professional core team, with at least one physician and one nurse having specialized qualifications in palliative care. The service must be available around the clock. To ensure the quality of these services, the legislature has set certain framework conditions.
Important: If you need palliative care – whether as an inpatient or outpatient – first talk to your family doctor or your treating oncologist. Many doctors work closely with an outpatient network for palliative care. Support is also offered by the outpatient hospice services that are available in your region. You can obtain the addresses from your health insurance company, from your (family) doctor, on the Internet from the German Hospice and Palliative Association or via the PalliativPortal. Accept help. You do not need to be alone.
Focus of palliative medicine and hospice work
- Psychosocial support and emotional support for you as well as your loved ones; as volunteer or professional support can be very helpful in processing the feelings that arise when dealing with the end of life.
- Religious/spiritual support, so that you can find opportunities and space to ask your questions about life, meaning and death.
- Symptom relief, including especially the treatment of pain and other discomforts that can occur in the last phase of life.
- help and support in dealing with organizational matters.
Different professional groups work closely together in palliative care
The diverse tasks of palliative care make it imperative that very different professional groups – doctors, psychologists, social workers, chaplains and, of course, nursing staff – work closely together and exchange information with each other on an ongoing basis. This so-called interdisciplinary approach ensures that the various professions jointly place the well-being of the person affected at the center of their work from their own perspective. Because every person has his or her own personal needs and habits that have become ingrained over years and decades. In addition, there are his or her very own family roots and cultural experiences.
However, it is often no longer possible to be at home at the end of life, even though everyone involved in the hospice movement and palliative care would like you to be. So if you have to be in an environment that is initially foreign to you, at a time when things are going badly for you, one thing is especially important:
Important: From the very beginning, you should have the impression that the people who are there for you are guided by you and that you do not have to adapt to the customs of a hospital.
For example, in the dr. Mildred Scheel House in Cologne: wood and pastel colors define the atmosphere in the patient rooms. The inner garden is accessible from every patient room and gives the impression of a home in the countryside.
In this respect, we would like to reassure you and at the same time encourage you to engage with the professionals in hospice and palliative care. You will find some addresses at the end of this brochure.
Picture: View into the garden of the Dr. Mildred Scheel House