Palliative care

Nicole Wendler holds a PhD in biology in the field of oncology and immunology. As a medical editor, author and proofreader, she works for various publishers, for whom she presents complex and extensive medical issues in a simple, concise and logical manner.

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A life in dignity right up to the end - that is the wish of every human being. Making this possible for the terminally ill is at the center of palliative care. Professional physical care with psychosocial and spiritual support is an important prerequisite for the greatest possible quality of life, autonomy and freedom from pain.

Palliative medicine understands life in its entirety and death as part of life. It is therefore difficult to distinguish between terminal care ("hospice care") and palliative care ("palliative care nursing"). Basically, hospice care takes care of the last weeks or days in a person's life and a dignified death. The aim of palliative care is to enable sick people to live in their familiar surroundings for a long time. This could be months or even years.

Palliative care tasks

Palliative care is a holistic concept. She keeps an eye on the sick person, but also on their environment and relatives. The following areas are taken into account:

• Physical condition: pain, shortness of breath, wound care, itching, storage, lymphedema, diet, oral care, nausea, vomiting, constipation, diarrhea
• psychosocial aspects: fear, anger, grief, depression, organization of everyday life, contact with relatives / caregivers and their integration into palliative care
• Social integration: social network, settlement of unfinished business, conflict management
• Mental and spiritual ("Spiritual Care") questions: meaningfulness of life, balance of life, spirituality, space for farewell and loss situations, pastoral support

Palliative care is extensive, as the example of the frequent symptom of "shortness of breath" shows. Sufficient fresh air, loose clothing, supportive positioning, breathing exercises, massages, psychological support to control feelings of anxiety, avoidance of stress factors, an emergency plan in the event of breathlessness attacks, administration of oxygen, painkillers and other drug therapies are important components of care.

Who takes on which tasks?

Home palliative care begins even before discharge from the hospital. Many things have to be organized in advance: accessibility, if necessary a suitable care bed, auxiliary and hygiene aids, meals on wheels and much more. In order to avoid a supply gap, some cancer centers in particular have set up so-called bridge care or transition care for this point in time.

With the help of general outpatient palliative care (AAPV), the majority of palliative patients can lead a dignified life in familiar surroundings, even to death. General practitioners and specialists (e.g. specially trained pain therapists) take care of the care together with outpatient nursing and hospice services, other professional groups (social workers, psychologists) and volunteers.

In the case of some illnesses, this care is not sufficient. In these cases, the specialized outpatient palliative care (SAPV) can help. It is intended to enable people with extensive care needs to be cared for accordingly. A so-called "Palliative Care Team" works closely together at the SAPV. It consists of:

• Doctors with additional training in palliative medicine
• Health and nursing staff with appropriate training
• Physiotherapists
• Social workers
• Psychologists or psycho-oncologists and pastors

The "Palliative Care" team has palliative specialist knowledge, documents and coordinates, ensures the quality (advanced training, supervision) of palliative care and can be reached by phone around the clock. It maintains close contact with the family doctor, hospital, nursing service, hospice, outpatient hospice service or pharmacy and with relatives and volunteers.

According to the German Hospice and Palliative Association, around 1,500 outpatient facilities, 214 inpatient hospices for adults, 14 children's hospices, 250 palliative wards and over 270 SAPV teams share the responsible task of palliative care in Germany. The coordination office for hospice and palliative work has also been in existence in Hamburg since 2007. It is the central point of contact for everyone who cares for people at the end of life in the medical, nursing, psychosocial and spiritual fields.

Information for voluntary and private carers

Most sick people want to stay in their familiar surroundings. Even if the supply of care increases, it is hardly possible to fulfill this wish for every person affected. The hospice and palliative work is therefore urgently dependent on volunteers and caring relatives.

Anyone who would like to volunteer in the demanding task of caring for the dying and relatives can get in touch with a corresponding facility in the vicinity and inquire about the possibilities of cooperation. The "Guide to Hospice and Palliative Medicine Germany" also provides important information. Qualifying training in preparation for this activity and supervision are required in any case. Free information events help to gain a first insight into the work.

Support for family carers

Caregiving relatives can find useful information on the websites of the Federal Ministry of Health, the German Pension Insurance and the Federal Ministry of Justice and Consumer Protection.

Anyone who has decided to take on palliative care for a close person should not be afraid to seek support. The physical and psychological stress is particularly great for family carers. There are many specialist agencies across Germany (Caritas, Red Cross) that offer you psychosocial advice, support, relief and information.

Palliative care at home - what are the limits?

Everyone wants to avoid a stay in hospital if possible.Seriously ill people in particular have had a few inpatient stays behind them and long for the peace and security of their home environment. This is often also possible with the current palliative medical structures, but there are also limits to this. An acute worsening of the disease, infections or pain that is difficult to control can (in the best case temporarily) make an inpatient stay necessary.

When is medical advice necessary?

In palliative care, close contact with the family doctor or the attending palliative doctor is important. Regular examinations help to anticipate impending emergency situations and complications and to take countermeasures at an early stage. Pain medication, any operations that may be necessary or a reclassification of the need for care are also medical tasks. In emergency situations and in the event of death, the doctor must be contacted.

Even with good organization, home palliative care can reach its limits. If the need for care increases, the burden on the carer also increases significantly. It is not uncommon for it to exceed personal capacities and the carer himself becomes ill. Psychological complaints, sleep disorders, irritability, depression and anxiety, but also other physical symptoms or alcohol or drug abuse can be alarm signs of impending excessive demands. Other palliative care options may need to be considered.

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