Palliative medicine at the limit

Dr. rer. nat. Daniela Oesterle is a molecular biologist, human geneticist and trained medical editor. As a freelance journalist, she writes texts on health topics for experts and laypeople and edits specialist scientific articles by doctors in German and English. She is responsible for the publication of certified advanced training courses for medical professionals for a renowned publishing house.

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Germany's first palliative care unit was not established until 1983. Many hospice and palliative care facilities have been set up since then, but experts say better funding is needed. This is the only way to counter demographic change and increasing numbers of seriously ill people.

Anyone visiting their terminally ill relatives in the palliative care unit will encounter many impressions. There is a dignified calm and the rooms are friendly. Doctors and nurses impress with their specialist knowledge and great empathy. The technical and medical care is also exemplary. You are reassured to know that your loved one is in professional hands and well looked after. "I was relieved to see my terminally ill husband in such good hands," says Barbara Peters *, whose partner died of cancer. However, her husband was not the only one who received professional support. "My family and I were also relieved of some of the burden through discussions and advice."

Positive development in palliative medicine

As Barbara Peters experienced in the palliative care ward, many relatives of the terminally ill perceive the valuable help of specialist palliative wards. To achieve this, a lot has been done over the past thirty years. Since the establishment of the first palliative care unit, a nationwide network of palliative facilities has emerged in Germany. Around 250 palliative wards, 214 inpatient hospices, 14 children's hospices and around 1500 outpatient palliative facilities and over 270 specialized outpatient palliative care facilities support the care of the terminally ill and their relatives.

In addition, the German Society for Palliative Medicine was founded, palliative medicine was introduced as a compulsory and examination subject in medical studies at universities, and outpatient palliative care for terminally ill patients is now legally secured. Politicians and the German Medical Association are also in favor of a comprehensive and high-quality expansion of palliative care.

Is the supply enough?

According to increasing voices, however, palliative medicine is under great strain. There is a lack of facilities, as the response to demographic and health developments in the population was presumably too late. The increasing number of elderly people, but also the increasing number of tumor diseases and chronic diseases such as dementia or COPD (chronic obstructive pulmonary disease) are pushing the limits of our capacities.

In 2010 the University Clinic Erlangen founded an independent palliative ward, although "the financing situation was a challenge", according to Prof. Ostgathe, head of the palliative medicine department of the Erlangen clinic and vice president of the German Society for Palliative Medicine. "The university clinic had recognized the importance of an independent department with a chair and research, and saw this step as sensible. We received great support from the clinic's administration and finance department." Since then, this, like other palliative wards, has been financed through the services provided. However, the billing modalities are not very accommodating.

Financing incredibly difficult

In Germany, palliative services are no longer billed according to daily flat rates, but according to the diagnoses made, i.e. according to the so-called DRG system (diagnosis-related groups, disease-related groups = DRGs). However, this is problematic for many palliative care professionals, because the care of the dying is differently complex and therefore can hardly be mapped using the underlying diagnoses. Palliative medicine is therefore of little interest for private hospitals. According to Professor Ostgathe, "in Germany around 15 percent of hospitals have palliative care structures. If there were adequate funding or if one could even make a little profit, then this number would be significantly higher."

In addition, detailed, very time-consuming documentation is required for the cost bearers. "It is being made incredibly difficult for the institutions to get the money," says Professor Ostgathe. "I would like our employees to do less documentation and spend more time on the patient. Documentation costs so much time per year that you could hire another nurse for the money."

The problem is not limited to clinics. All providers of palliative services are affected. Not only collecting the services, but also regional differences in the level of fees make palliative work more difficult. "The best financing solution has not yet been found in Germany," says the Vice President of the German Society for Palliative Medicine.

Palliative medicine - where is it going?

The federal and state governments are therefore called upon to guarantee future security of supply. The German Society for Palliative Medicine, the German Palliative and Hospice Association and the federal associations of the providers of geriatric care institutions are particularly committed to this. "We have good political tailwind at the moment," said Professor Ostgathe. "All political parties carry the further development of palliative care before them like a mantra. But lip service must not remain, it must then - among many other points - be reflected in adequate funding."

The Bundestag took a first important step in this direction at the beginning of November 2015 when it passed the draft law to strengthen hospice and palliative care in Germany with a large majority. The hospices, which are currently still below average financed, should benefit from rising daily rates. Voluntary employees of outpatient hospice services are to be reimbursed not only for personnel costs but also for material costs (for example, travel expenses for volunteer employees).

End-of-life care should also become an express part of the statutory long-term care insurance. This is intended to strengthen palliative care and the hospice culture in nursing homes and hospitals. The health insurance companies, on the other hand, should cover the costs of individual medical, nursing, psychosocial and pastoral care in the last phase of life.

Political decisions are also helpful if they support people directly. On October 15, 2014, the government passed a draft law to relieve relatives. Accordingly, relatives are now entitled to care leave to care for their relatives at home. "After being released from the palliative care unit, I looked after my partner at home until his death.I not only wished him the last days of his life in his familiar surroundings and with his family, I also had a need met, "says Barbara Peters." Together with the outpatient palliative care team and the family care, he died in peace and dignity . "

* Name changed on request.

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