A life-affirming attitude without excluding dying is one of the principles of palliative care. It focuses on improving the quality of life of people who are taking their last steps in this world. A complex situation for the affected person, but also for the attending physician and the nursing staff.
Dying is part of life – from the very beginning. But very few people face up to this fact. It is better to suppress a hopeless situation until it is often too late. However, oncological patients in particular have to deal with the issue. It is not uncommon for them to find themselves in a situation where treatment regimens are no longer effective and metastases weaken the body. Many sufferers die in hospital. But most wish to be able to spend their last days or hours in their familiar surroundings. Then the care is taken over by colleagues in private practice. A mentally and physically difficult task that also ties up a lot of time resources. Although palliative medicine is increasingly becoming the focus of attention and much has been done in this area, the care of patients at the end of life requires not only medical knowledge, but also legal knowledge and psychological principles.
Palliative Care up-to-Date
Palliative care focuses on improving the quality of life of people suffering from a terminal illness. Distressing symptoms should be recognized and alleviated at an early stage. Palliative care ultimately begins not in the last days of life, but much earlier. Nor is it exclusively concerned with the person affected, but also includes the relatives. The idea is to affirm life, but to integrate dying as a normal process
(Overview 1)
[1]. The focus is basically on the time when curation of the disease is no longer possible and therefore no longer a primary goal. The needs of those affected are taken into account comprehensively and continuous care is guaranteed. According to WHO, palliative care is defined as an attitude or treatment designed to improve the quality of life of patients and their families when a life-threatening illness is present. It achieves this by actively seeking out pain and other physical, psychosocial, and spiritual problems early, repeatedly assessing them, and treating them appropriately [2].
Access to adapted medicine
The need for palliative care will increase significantly in the future. The current age structure of the Swiss population will lead to an aging society in the long term [3]. The Federal Statistical Office has developed three basic scenarios, according to the middle scenario of which the proportion of people over 65 will rise to 28% by 2060. The health care system must adapt to the fact that the care of people in the last phase of life is becoming more complex. This is because projected deaths are also expected to increase by about one-third in the coming years, from 60,000 to 80,000 people annually [3]. Accordingly, the number of palliative patients is likely to increase. It is estimated that approximately 40,000 people receive palliative care each year. In the next 20 years, the number could increase to approximately 53,000 patients [3].
Focus on palliative care
Palliative care is a cross-sectional medical specialty based on close collaboration between multiple disciplines. Ultimately, this is the medical part of palliative care. This is divided into general and specialized palliative care. In order to acquire an interdisciplinary focus in palliative medicine, a specialist title must be available and 3 years of continuing education must be completed. This will cover the basics of palliative care, as well as information regarding symptom control, dying and death, decision making incl. Therapy goal change at the end of life, communication, and interprofessionalism taught [4].
Extensive range of tasks
The palliative care physician has a broad scope that includes not only concepts of quality of life, autonomy, salutogenesis, resilience, and dignity. Likewise, he develops a problem-oriented, patient-centered, evidence-based approach, among other things. This is discussed with the persons concerned and their relatives and evaluated regularly in accordance with the objectives. In addition, emergency situations must be recognized quickly and assessed according to the situation. However, the doctor must never lose sight of one thing – himself. Therefore, self-awareness, self-management, and self-care skills must be trained and attentively applied.
Optimizing patients’ quality of life requires effective analysis of the complex situation. Differences between pain and suffering come to the fore, as does the fear of those affected or their relatives. Palliative care physicians also often operate in gray areas when, for example, pharmacologic therapies are used off-label. Dealing with dying people must also be learned. This special situation must be coped with not only psychologically. It also requires extensive knowledge of the dying process and, for example, the importance of hydration. Topics such as euthanasia, killing on demand or assisted suicide will also have to be discussed.
Helping people to help themselves?
Switzerland is one of the most liberal countries with regard to voluntary euthanasia. More and more people are also resorting to this option. The Association for Humane Dying German Switzerland EXIT records an increase in membership. She performs the so-called suicide escort. For this to happen, however, the person willing to die must be fully capable of making a decision and must be able to carry out the last step, i.e. drinking the medication dissolved in water or opening the infusion tap, himself. This form of euthanasia is considered assisted suicide and is not punishable under Article 115 of the Criminal Code, provided that a selfish motive for assisting can be excluded [5]. Both indirect active euthanasia, i.e. the use of means to alleviate suffering whose side effects can reduce life expectancy, and passive euthanasia are not clearly regulated. In this case, life-sustaining measures are not taken or are discontinued. However, both are considered permissible. In contrast, direct active euthanasia, i.e. the deliberate killing to shorten the suffering of another person, is actually punishable [5].
History of Palliative Care
As early as the Middle Ages, poor, sick and dying people were cared for in special institutions, healed or respectfully accompanied into death. In London, this idea was taken up again in 1967 by Cicley Saunders, who founded a hospice department at St. Christopher’s Hospice in London. Here, terminally ill and dying patients not only received specialized medical treatment and nursing care, but also emotional, spiritual and social support. St. Christopher’s became the model for countless hospices and palliative care units around the world. In Switzerland, the nurse Rosette Poletti was primarily responsible for this at the Ecole du Bon Secours in Geneva in 1970. Subsequently, the Hospice of Aargau, the Zurich Association for the Accompaniment of the Seriously Ill and volunteer groups at the Cantonal Hospital of Baden were founded. The “Hämmerli affair” brought the topic of assisted dying/assisted suicide into the public eye in 1975. The “Swiss Society for Palliative Medicine, Care and Support SGPMP” was founded in 1988 with the goal of a nationwide network. The professional society was multiprofessional from the beginning and is now called palliative.ch [6].
Promotion through national health policy
The fact that palliative care is becoming increasingly important is also shown by the “Dialogue National Health Policy” platform [7,8]. The Confederation and the cantons, together with the main stakeholders, have developed a strategy to address the problems identified in the areas of care, financing, awareness, education and research. A national guideline defined core values, target groups, treatment sites, and providers. One of the goals, for example, was to provide palliative care adapted to the situation for seriously ill and dying people in Switzerland – irrespective of age, illness, origin and financial means. Likewise, this should also be done regardless of location (hospital, home, hospice or home). The cantons are responsible for ensuring the provision of care. Costs are covered in accordance with the general principles of the KVG. Compulsory health care insurance covers the costs of services that serve to diagnose or treat an illness and its consequences
(Overview 2)
[9].
Precaution through living will
Before a patient is no longer able to decide how he or she would like to receive medical care, he or she should be made aware of the possibility of an advance directive. This takes effect when the patient himself is no longer able to make decisions or express his will. The written will is binding for the treatment team and the relatives. Patient forms are issued by different institutions and often adapted to specific situations. For example, the Cancer League’s living will addresses in depth specific issues that may arise in the event of cancer. These include measures to relieve pain, shortness of breath and other symptoms, issues such as nutrition and hydration, and questions about resuscitation measures [10]. The document should be completed with the assistance of professionals, if possible. For the living will to be legally valid, it must be dated and signed by hand. If the patient is no longer able to do so, it must be notarized. As a rule, the desire to talk about this issue should come from the patient. However, medical care may dictate that you broach the subject yourself, especially if there is not much time left. When drafting one’s will, the physician can be a valuable advisor, providing medical information to support the patient’s decision.
Take-Home Messages
- Palliative care aims to ensure an optimal quality of life adapted to the situation.
- Included, in addition to medical treatment, are nursing interventions and support in the psychological, social and spiritual areas.
- The palliative care physician addresses the complex concerns of the patient at the end of life. In addition to ensuring quality of life, this includes support in terms of autonomy, salutogenesis, resilience and dignity.
- A living will can help maintain self-determination until the end.
Literature:
- www.krebsliga.ch/ueber-krebs/palliative-care/ganzheitliche-und-umfassende-pflege (last accessed 10/14/2020)
- www.palliative.ch/de/palliative-care/was-bedeutet-palliative-care/ (last accessed 10/14/2020)
- www.palliative.ch/fileadmin/user_upload/palliative/publikum/2_PalliativeCare/2_7_Kurzversion_Nationale_Strategie_Palliative_Care_DE.pdf (last accessed 10/14/2020)
- www.siwf.ch/files/pdf17/palliativmedizin_version_internet_d.pdf (last accessed 10/14/2020)
- www.myhandicap.ch/pflege/pflegebeduerftige/palliative-care-und-sterbehilfe/ (last accessed 10/14/2020)
- www.palliative.ch/de/palliative-care/die-geschichte-der-palliative-care/ (last accessed 10/14/2020)
- www.pallnetz.ch/cm_document/BAG_Pall_Versorg_d_def1.pdf (last accessed 10/14/2020)
- www.palliative.ch/fileadmin/user_upload/palliative/publikum/2_PalliativeCare/2_7_Kurzversion_Nationale_Strategie_Palliative_Care_DE.pdf (last accessed 10/14/2020)
- www.palliative.ch/de/palliative-care/wer-bezahlt (last accessed 10/14/2020)
- www.krebsliga.ch/ueber-krebs/palliative-care/patientenverfuegung-der-krebsliga (last accessed 10/14/2020)
InFo ONCOLOGY & HEMATOLOGY 2020; 8(5): 12-15.
