Home Medicines Palliative care – she can do that

Palliative care – she can do that

by Josephine Andrews
Published: Last Updated on 370 views

A life of dignity to the end – that is the wish of every human being. Making this wish possible for the terminally ill is at the heart of palliative care. For the greatest possible quality of life, autonomy and freedom from pain, professional physical care of the patients with psychosocial and spiritual support is an important prerequisite.

Palliative care understands life as a whole and dying as part of life. It is therefore difficult to distinguish between end-of-life care (“Hospice Care”) and palliative care (“Palliative Care Nursing”). Basically, hospice care takes care of the last weeks to days of a person’s life and a dignified death. The aim of palliative care is to enable the sick person to live in their familiar surroundings for as long as possible. This can be several months or even years.

tasks of palliative care

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: health problems (such as pain, shortness of breath, itching , nausea, vomiting, constipation, diarrhea, wounds), nutrition, oral hygiene, correct positioning in bed
  • Psychosocial aspects: e.g. fear , anger, grief, depression in the patient, organization of his everyday life, contact with relatives/reference persons and their integration into palliative care
  • social integration: social network, settlement of unfinished business, conflict resolution
  • Mental and spiritual (“spiritual care”) questions: meaningfulness of life, balance sheet, spirituality, space for farewell and loss situations, pastoral support

Palliative care is extensive, as exemplified by the common symptom of shortness of breath: adequate fresh air, loose clothing, supportive positioning, breathing exercises , massage, psychological care to manage anxiety , avoidance of stressors, a contingency plan in case of shortness of breath, oxygen, pain medication , and others Drug therapies are important components of the care of affected patients.

Structure of palliative care

In Germany, palliative care is based on two pillars – general and specialized palliative care:

General palliative care (APV)

General palliative care (APV) is aimed at patients who are in a low or moderately complex situation (e.g. mild symptoms, slow or moderate progression of the underlying disease, balanced mental state).

>> outpatient : Many of these patients canlead a dignified life until death at home with the help of general outpatient palliative care (AAPV). Depending on the needs of the patient, the care team can include specialists (e.g. pain therapists, oncologists), outpatient care and hospice services and other professional groups (e.g. psychologists, social workers) in addition to the general practitioner.

>> inpatient : If care in your own four walls is not possible, general palliative care is implemented as an inpatient in a hospital or in a care facility – with possible support from outpatient hospice services. Some patients also spend their last days in an inpatient hospice .

Volunteers can help in all areas (outpatient, inpatient) with the care of the dying.

Specialized Palliative Care (SPV)

Palliative care patients in a highly complex situation (e.g., symptoms that are difficult to treat, severe anxiety, difficult and unsupportive family relationships) require more extensive care than general palliative care can provide. Then specialized palliative care (SPV) comes into play.

>> outpatient : If possible, the affected patients are cared for at home – with the help of specialized outpatient palliative care (ASPV) . A team of professionals ( Palliative Care Team, PCT ) is responsible for thisat least one representative from the medical profession, nursing and another professional group (e.g. physiotherapy , psychology). At least the doctor and nurse must be trained in specialized palliative care (specialized palliative medicine qualification).

The palliative care team documents and coordinates a patient’s palliative care and advises their carers (family doctor, outpatient care or hospice service, etc.). Close contact is also maintained with relatives. The PCT is available 24 hours a day (seven days a week/24 hours).

At the outpatient level of specialized palliative care, patients can also be looked after in a specialized palliative outpatient clinic or in a day hospice (day care in the hospice, return home in the evening).

>> inpatient : Palliative care units are available in many hospitals for the necessary inpatient care of seriously ill, dying patients. Other care options include in -hospital palliative care services , palliative care day clinics , and inpatient hospices .

Both outpatient and inpatient, outpatient hospice services and volunteers can help with specialized palliative care.

Nationwide, there are around 1,500 outpatient hospice services, around 250 inpatient hospices for adults, 18 hospices for children, adolescents and young adults and around 340 palliative care units in hospitals (four of them for children and adolescents) (as of April 15, 2021). There are also 361 teams for specialized palliative care (as of May 12, 2019). Of these, 35 are aimed at children and young people (as of April 15, 2021).

Information for voluntary and private carers

Most patients would like to remain in their familiar surroundings. But even if the supply of care increases, it is hardly possible to fulfill this wish for every person affected. The hospice and palliative care is therefore urgently dependent on voluntary helpers and caring relatives.

Anyone who would like to volunteer in the demanding task of caring for the dying and their relatives can contact a suitable facility nearby and inquire about the possibilities of working with them. The “Guide to Hospice and Palliative Medicine Germany” (www.wegweiser-hospiz-palliativmedizin.de) also provides important information. Qualifying training to prepare for this activity and supervision are necessary in any case. Free information events help to gain an initial insight into the work.

Support for family caregivers

Anyone who has decided to take on the palliative care of a loved one should not be afraid to ask for support. The physical and psychological burden is very high for family caregivers. There are many specialist agencies nationwide (such as Caritas, Red Cross) that offer psychosocial advice, support, relief and information.

Palliative care at home – what are the limits?

Everyone wants to avoid a stay in the hospital if possible. Seriously ill people in particular have often had to stay in hospital for several times and long for the peace and security of their home environment. This is often possible with the current palliative care structures, but there are also limits. An acute worsening of the disease, infections or pain that can hardly be controlled can (at best temporarily) make an inpatient stay necessary.

When is medical advice needed?

In palliative care, close contact with the general practitioner or treating palliative care physician is important. Regular examinations help to anticipate imminent emergency situations and complications and to take countermeasures at an early stage. Pain medication, any necessary operations or a reassessment 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 caregivers also increases significantly. It is not uncommon for a relative to exceed their own limits and become ill themselves. Mental health problems, sleep disorders , irritability, depression and anxiety, but also other physical symptoms or alcohol or drug abuse can be warning signs of impending excessive demands. Other palliative care options may need to be considered.

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