When the end of life dictates the time

The diagnosis: severe disease with shortened life expectancy. What now? What happens next? What is the next step? Who can I turn to? These questions run through the minds of relatives in particular. Therefore, it is important to take a closer look at the individual services: What options are there for care? What are the requirements? What should be taken into account?

Note: Why “family members” and not “relatives”? For a dying person, it is often not the family members who are the most important part of the support, but it can also be friends, neighbours or even, for example, one’s own dog. Here, too, we have reached the point of looking at what the dying person needs in a particular situation.

What is palliative care?

According to the WHO, the following definition of palliative care exists: “Palliative care is an approach to improving the quality of life of patients and their families facing problems associated with a life-threatening illness. It does this by preventing and relieving suffering through early recognition, careful assessment and treatment of pain and other problems of a physical, psychosocial and spiritual nature.”

Dying people have different needs and all forms of care have the same goal, namely to meet the needs.

Dying people want self-determination, preferably in their own home, in familiar surroundings, in the company of loved ones. The wish is to endure as little pain as possible, to take care of last things and also to enter into conversation and receive open, honest answers to questions. All palliative care is about a basic attitude. Having time, being there, listening, relieving the environment and giving advice. Trying to make the last wishes possible, accepting people as they are and accompanying them with dignity.

In palliative care there are no prohibitions: the dying person may eat what he or she wants, the dying person may drink what he or she wants. Even alcoholic beverages and other stimulants are no longer taboo. In the very last phase of life, oral care is an essential part of palliative care. Even oral care may be carried out with ice cubes, e.g. made of wine.

The fears, needs and concerns of the dying and their relatives are listened to. Dying is accepted and seen as part of life. This is often not easy for the relatives, which is why a multi-professional team is indispensable in this area. Comprehensive professional palliative medical and nursing care, as well as reliable psychosocial and spiritual support find a place in the hospice-palliative movement.

What are the options for outpatient care?

The hospice and palliative sector aims to ensure the greatest possible autonomy for people until the end. This is possible through a broad-based care structure. There are different outpatient care options for this:

•  Doctors in private practice take over the continuous care, usually over a period of years.
• • Outpatient hospice services/hospice groups: mainly volunteers, who have undergone a special qualification over one year, advise and accompany patients and their relatives in the home environment.
• • Outpatient children’s hospice services accompany families from the diagnosis of a life-shortening illness, during life and death and beyond. Detailed information and a nationwide search portal can also be found at the Deutschen Kinderhospizvereins e.V. aka German Children’s Hospice Association.
• General outpatient palliative care (AAPV): (AAPV): vcare for patients whose disease is far advanced. This outpatient form of care consists of general practitioners and specialists in private practice and through outpatient care services and usually flows together with the usual home care.
• Specialized outpatient palliative care (SAPV): if AAPV is no longer sufficient, Specialized Outpatient Palliative Care comes into question. A specially trained team (PCT= Palliative Care Team) is available 24 hours a day. If necessary, the nursing specialist comes on site and advises, supports and alleviates symptom burdens. A palliative doctor is always available in the background and can be called in. This is financed by the health insurance fund.

What are the options for inpatient care?

It is not always guaranteed that the dying person can remain at home in their environment. If the situation arises that there are too many symptoms that the loved ones can no longer handle, it may be that the dying person is better off in a palliative care unit or in an inpatient hospice.

In these settings, the loved one is allowed to give up and just be there, as a wife, husband, child….s medical, nursing care no longer needs to be taken care of.

Palliative care units are specialized hospital facilities for the care of people with an advanced life-limiting illness. This usually consists of a small number of beds (approx. 10-16 beds), and there is also an increased staffing key. This unit offers a particularly protected space in order to be able to manage demanding situations medically, purposefully and with respect for dignity. The aim is to alleviate the symptoms as far as possible and improve the quality of life.

Palliative chemotherapy/radiation to halt cancer growth and stop further growth or slow the spread via metastases may be given. If discharge is no longer possible, the multi-professional team of palliative physicians and specially trained nursing staff, pastoral care, volunteers, therapists such as music therapists are available to assist the dying person and their relatives.

Various offers are available to promote the quality of life: Aroma care with essential oils, music therapy, art therapy with art therapists or even animal-assisted therapy. There are no visiting hours on palliative wards, as relatives can be very important for the patient during this phase of life. Approximately 15% of hospitals in Germany have one of the 350 palliative care units nationwide.

Inpatient hospices are independent residential facilities with a small number of beds (approx. 8-12). The focus is on people, who are called guests in the hospice, with an advanced life-limiting illness and their relatives with their respective needs.
In a hospice, therapies such as chemotherapy no longer take place. This is the big difference to a palliative ward. The focus here is purely on symptom control.

Holistic nursing and care are provided by full-time and voluntary hospice staff in cooperation with (family) doctors experienced in palliative medicine. SOPC teams can also accompany patients in the inpatient hospice.
There are also no visiting hours. The costs are being cared for up to 95 percent by the health insurance company, the other 5 percent are balanced by donations. Nationwide there are about 260 stationary hospices.