Rare Diseases, KMSK Knowledge Platform, www.kmsk.ch

Palliative Care,
Parting and mourning
Palliative Care, Parting and mourning

Pallium is originally the name for the cloak of an orderly.

Thus, a child with a life-limiting, life-threatening or chronic illness should receive holistic care together with his or her family under the protective mantle. The goal is to achieve the best possible quality of life for affected children and adolescents and their families. Topics such as dying, death and mourning are not necessarily in focus, but are seen as a natural process and, if foreseeable, are also addressed.

Disclaimer information

Important notes

Note 1: Palliative care is more than just end-of-life care

In palliative care, in addition to physical symptoms, special attention is also paid to mental psychological, developmental-psychological, sociocultural and spiritual aspects are taken into account. Palliative care is thus holistic in its approach and encompasses phases of illness in which therapies no longer have the goal of a cure, or the Cure, the success of the therapy is unclear, therapy failure is possible or premature death is premature death is probable. Palliative care does not, however, result in a Shortening of life, but is intended to improve the quality of life. Therapies are not discontinued, but possibly guided in a different direction. Thus, palliative care can offer parents support and a network even when it is unclear to what extent your child's rare disease is life-shortening. It is possible that an informational discussion (e.g. in the hospital) after diagnosis may be enough to inform you about palliative care and the support and its support services. Sometimes the Support is a path that you, as the parents affected, would like to take you would like to take as affected parents. Also diagnosis that a cure for the disease is not possible, palliative care is not necessarily is not possible, palliative care is not necessarily required. If the Course of the disease leads to increasing instability of the state of Health condition, high demands on the care and support of the child, and/or excessive and/or excessive demands on the environment, it can be useful and relieving, To contact specialists in the palliative care network.

An early involvement of a specialized team by the attending physicians is certainly advantageous, since good Information can also lead to security and stability for the families concerned can.

Note 2: Continuity and good coordination are important in palliative care

Seriously ill children and their parents generally receive early care by professionals and specialized teams. In general, parents report Parents report good experiences and are satisfied with the care of their Child. A challenge is the continuity and coordination of care Care represent a challenge. For you as affected parents, it can therefore be important to that a specialist responsible for you is available for longer-term care (e.g., transition from (e.g. transition from hospital to home) who is responsible for you, who is responsible for you. This creates trust and the responsible Specialist already knows you and your child. It is also important that that this contact person is available to you and can be reached, especially in emergency situations and is reachable.

Note 3: Self-determined decision and planning ahead

During the course of palliative care, it can become important that parents are informed about the topics Behavior in emergencies as well as farewells and Mourning in a comprehensive and comprehensible manner. This can be a painful process. But only if you, as parents, are well and comprehensively informed, you can have your say, make conscious decisions and think think ahead.

In addition, it is important that parents and palliative care professionals repeatedly talk through the jointly agreed procedures. After all, ideas can change over time without being consciously communicated to the outside world by those affected.

It can be helpful here if you inform your professionals about potential Your professionals about potential crises and emergencies and work with them to and create a crisis and emergency plan with them. To prepare for discussions with professionals, it may be useful to write down important information about your child, questions, or fears that are on your mind. You can then take such notes to hand and you will not forget anything.

Note 4: Accepting relief is not weakness and keeps from overloading

Relief is immensely important and can be accepted in different ways: Kinderspitex, relief service, community service, help from relatives and friends, cleaning lady, help with cooking or even in emergency institutions. If your child goes to kindergarten, school or training, you will also receive relief and support here. All this helps to regain strength. As parents, you should not feel guilty about leaving your children in the meantime. In the end, your child will benefit if you can recharge your batteries. For example, one perspective might be: "By letting my child be cared for by professionals, I am giving him or her the chance to receive the best possible support. Because first and foremost, I am a parent - not a therapist, a social worker, or any other professional." Of course, you are still your child's experts, because you undoubtedly spend the most time together and know him or her the best - and yet it is important that you regularly allow yourselves small islands of peace. It is good to build up a relief system (if necessary consisting of several institutions and (specialist) persons) early on and not only when it is too late. Such a network can also help you to plan for the long term. In order to optimally plan and secure the care of your child, the creation of a care plan is central. And dare to say yes when friends and relatives offer their support.

Note 5: Create shared memories

When you know you're going to lose someone, it helps to create memories together Memories together, in the form of photos, sound recordings, shared experiences Experiences or videos. It helps to talk together about what's important to you and to important to you and to find an open way of dealing with farewells and death find.

Note 6: Special attention is also given to siblings

Children and adolescents need above all age-appropriate Information and open communication in order to be able to understand the life-limiting illness and possibly also the death of the sibling. In preschool, for example, it is a matter of picking up the sibling where he or she stands, with his or her questions and feelings. At this age, children are primarily aware of the emotions of those around them. They are shaped by the experiences they have right then. They often relate what has happened to themselves and see connections that are not rationally comprehensible. It is important to give a language to what they experience and feel and to explain to them that mommy and daddy are sad, but not because they did something wrong. Normality also helps. Affected sisters and brothers are allowed to have fun and feel joy without without having to feel ashamed of their feelings. It can also help in the mourning process if they are allowed to be creative, such as painting the coffin or making a farewell gift A farewell gift (many more suitable tips can be found here: Projuventute).

Note 7: Families do not have to walk the road of grief alone

There are specialized teams and professionals who offer accompaniment, provide answers and offer help when needed. For those of you who would like to take advantage of grief counseling, this can be a good way to access additional support, unburden yourself and process the loss.

This includes allowing emotions and talking about pain and feelings talk. Some grievers may find it helpful to write down their feelings and to and thus support the process of mourning. Grief is an individual process Process, and accordingly, everyone has different sources of strength that can help. Sometimes it also helps the affected families to give the deceased Child a place in their new life. Be this in the form of rituals or small memorials.

Important questions

What contact points are there in Switzerland that specialize in the topic of pediatric palliative care?

The contact points listed below are specialized in the topic of pediatric palliative care in Switzerland. You can also find important information on this topic in the handbook, among others: Caring Decisions: Handbook for Parents Facing Decisions for the end of their child's life

Children's Hospices

To date, there is no inpatient children's hospice in Switzerland that offers specialized Specialized pediatric palliative care.

However, the Foundation ≪Children's HospiceSwitzerland≫ plans to open one in Fallanden, Zurich, in 2024. There, children with life-shortening illnesses and their families will receive and their families for a limited period of time. Currently the foundation is already offering respite/holiday stays in Davos for which families can apply.

The association ≪allani≫, Kinderhospiz in Bern will also soon be its own children's hospice as well. The children are to spend time in the children's hospice Spend time and also be able to die.

And the association ≪Mehr Leben≫in Basel aims to operate a multigenerational hospice in its region operate.

Children's Hospitals

Children's hospitals in Switzerland are usually the first point of contact of affected families with the topic of pediatric palliative care and are specialized in educating families and accompanying them if necessary. The pediatric palliative care team at Kispi Zurich, for example, is composed of various professions and offers additional support for all ages, including counseling already during pregnancy.

Children's Spitex

If children suffer seriously suffering from an incurable or life-limiting disease, the kinderspitex provides the best possible professional care at home. Families are accompanied Care teams, families are accompanied - sometimes for many years for many years. This includes the best possible care at the time and forward-looking planning (advanced care planning) Planning (advanced care planning).

pro pallium - Swiss palliative care foundation for children and young adults

pro pallium is committed to providing relief, Support and networking for families with seriously ill children.

The most important pillar is family care with volunteers. It also advises parents, supports them in networking and accompanies them during the mourning period and accompanies them during the mourning phase after the death of their child.

Further addresses for palliative care

The following list makes no claim to completeness, but maybe there is a suitable address for you and otherwise you can research which offers for palliative care there are in your area In your area.

The addresses are not explicitly aimed at children, but for those affected and their relatives in general.

Which associations offer wish fulfillment for seriously ill children and their families?

The goal of the following associations is to make wishes come true and dreams come true for children with rare diseases. In this way, children whose everyday life is often characterized by many hospital stays, operations, renunciations and restrictions are given a moment of joy that they and their families will hopefully not forget.

What are some places to go that offer grief counseling?

The death of a child contradicts the normal cycle of life and overwhelms our imagination. A world collapses and parents are challenged to walk a path that is marked by much sadness. And grief is allowed to find a place in the Find a place in the lives of families. When a child dies, family members deal with their grief in very different ways. There is no one right or wrong way to deal with the situation Situation. Everyone grieves differently and the Needs and demands are different. Not everyone wants professional support. This must be respected. For those who would like to take advantage of grief counseling, suitable contact points are listed below. It may also be advisable to find out about services in your own canton of residence.

Professional groups and specialists who are the point of contact or can provide contacts:

  • Teams of gynecology, pediatrics, pediatric department, Intensive care unit in the hospital
  • Pediatricians in charge
  • Morticians (conduct personal And assist in the organization of the funeral and memorial service) Funeral service)
  • (Hospital) chaplains (provide spiritual guidance and support) spiritual guidance and support)
  • Social counselors (support with questions regarding costs, insurances, etc.)


Sabrina Bühler-Pojar is a psychologist and affected mother herself. She offers psychological counseling (in the area of Schaffhausen, Beringen, Guntmadingen) around the topics of partnership, sexuality, family planning, disability as well as mourning.

Interesting links


Family Bereavement Support.ch

Familientrauerbegleitung.ch is a network of trained professionals Which advises, accompanies and strengthens. With such a network, dealing with a loss can be Loss can be strengthened, and strength can grow from each step of parting and New beginning.

Interesting Links

Find grief counselors


kindsverlust.ch is a competence center for sustainable support support in the event of the death of a child during pregnancy, birth or the first first period of life. Here, advice for parents and families as well as networking opportunities are offered.

Interesting links

Free consultation service

Life With

"life with" is an offer especially for siblings who have lost their brother or sister. Group meetings and digital meetings are offered here.

Interesting Links

Life With offers

Aftercare Clinic Tannheim (Germany)

The Aftercare Clinic Tannheim offers a rehabilitation program for families, who have lost their sick child. While the siblings are enrolled in the Siblings are integrated into the children's and adolescents' groups of the parallel rehabilitation rehabilitation program, a corresponding discussion group is offered for the parents is offered for the parents.

Palliative Care

Good palliative care at the at the end of life can have a significant impact on the processing of the Loss of the beloved child. Normally, the palliative care team palliative care team accompanies and supports the parents or families concerned when a farewell is imminent and also when it has taken place.

During this Time, it can be helpful to ask questions, talk about wishes and record them in writing to record them in writing. In this way, they will not be forgotten and the farewell can thus be individualized and personalized. Palliative care teams can also Can pass on contact information for specific specialists and are also available and are also available to support affected families in the further course of the process. Many of the contact points that offer palliative care (see above), are also specialized in the topic of grief and offer appropriate support and counseling (e.g., the social services of children's hospitals).

Heavenly Child Association

Behind Himmelskind are mothers of deceased children. They offer acute help, grief counseling and exchange programs.

Association Crisis and Bereavement Support Switzerland

The Crisis and Bereavement Support Association supports those affected by loss and crisis situations. The focus is on empowering people who want to helpfully accompany and support those affected.

Network Heart Blood Association

The association Netzwerk-Herzblut supports families in crisis situations and accordingly also offers grief counseling.

Rainbow Switzerland Association

Regenbogen Schweiz is a self-help association for families of deceased children, which, in addition to support groups and other exchange offers, also has a specific offer for siblings.

Interesting technical articles from the KMSK knowledge books "Rare Diseases

1. KMSK Knowledge Book "Rare Diseases - Insights into the Lives of Affected Families"

Christa Etter, MD, Pediatrics and Adolescent Medicine FMH: "Letting go with love"

2. KMSK Knowledge Book "Rare Diseases - The Way - Genetics , Everyday Life, Family and Life Planning"

Prof. Dr. med. Eva Bergsträsser, Pediatric Palliative Care, University Children's Hospital Zurich: "Palliative care is much more than than just support at the end of life"

Cornelia Mackuth-Wicki, pro pallium Swiss Palliative foundation for children and young adults: "We are convinced that mourning is something important Important and natural"

3. KMSK Knowledge Book "Rare Diseases - Therapies for Children and Support for the Family"

Marie Jäger, Pediatric Palliative Care Team University Children's Hospital Zurich: "What does this family need?"

4. KMSK Knowledge Book "Rare Diseases - Psychosocial Challenges for Parents and Siblings"

Jolanda Scherler, Family Holiday Weeks, Foundation Children's Hospice Switzerland: "Families are experts in their children's Everyday life of their children - we relieve them with vacations in Davos"

5. KMSK Knowledge Book "Rare Diseases - Digital Knowledge Platform for Parents and Professionals"

Simone Keller, Children's Hospital Inselspital Bern:

Quality of life in the last phase of life

Annyett König, Family Bereavement Support Association: Grief is an individual process

Carla Fortunato, Kantonsspital Aarau AG: Acceptance can help to cope with death