Private paediatric hospice – is it such a bad idea?

Anja Lee

doi:10.4045/tidsskr.20.0784

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Private paediatric hospice – is it such a bad idea?

Norwegian

Anja Lee

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Anja Lee

E-mail: uxleea@ous-hf.no

Anja Lee, PhD, senior consultant at the Division of Paediatric and Adolescent Medicine, Oslo University Hospital, coordinator of the regional palliative care team for children and adolescents in the South-Eastern Norway Regional Health Authority. Chair of the Norwegian Society of Paediatricians' interest group for paediatric palliative care.

The author has completed the ICMJE form and reports no conflicts of interest.

Article

The decision to grant NOK 30 million annually to a private paediatric hospice in southern Norway is not compatible with the kind of ethical reflection that must be made on a daily basis in the public health service.

Paediatric palliative care in Norway is not primarily about dying children, but about the approximately 7500 children and adolescents who are living with serious illness (1). Less than 3 % of these children and young people die during childhood (2).

A hearing was held on 30 September 2020 on Report No. 24 to the Storting (Norwegian Parliament) (Palliative care – We're all going to die one day. But all other days we are alive) (3). In a debate on 22 September, Tuva Moflag (Labour party), the spokesperson for the Standing Committee on Health and Care Services, said that the Committee had received a surprisingly high number of comments on Chapter 7, on paediatric palliative care. Following the announcement in autumn 2019 by the then Minister of the Elderly and Public Health, Sylvi Listhaug, that the user organisation Norwegian Association for Children's Palliative Care would receive NOK 30 million for the establishment of Norway's first private paediatric hospice, more than 30 contributions to the debate have appeared in Norwegian newspapers. such as Dagens Medisin, Dagsavisen and Fædrelandsvennen. An article on palliative care (The organisation of palliative care: professionally sound or an undemocratic political game) (4), written by the authors of the Norwegian Official Report På liv og død (A matter of life or death) (5), points out that the process is characterised by the inclusion of high-profile names on the payroll of publicly-funded organisations in order to put in place a specific solution. There is unwavering opposition between the Norwegian Association for Children's Palliative Care on the one hand and the unified medical community, the majority of service user organisations and the Norwegian Directorate of Health on the other. Why does this issue evoke such strong feelings?

Norway is lagging behind

Neither palliative care of the seriously ill, nor hospice philosophy, meaning holistic treatment and care, is a new phenomenon. On the contrary: a holistic approach is the very core of the concept of palliative care, as defined by the World Health Organization in the last century (6).

According to the 2020 instructions from the Ministry of Health and Care Services, priority should be given to establishing regional paediatric palliative care teams

In other countries, paediatric palliative care has been a medical specialty for decades. In Norway, the first national guidelines were published in 2016, with recommendations for organising palliative care in a way that would ensure equal services for all children and adolescents (7). In 2019, the country's first regional palliative care team for children and adolescents was established at Oslo University Hospital. With a budget of NOK 2.2 million, the team has contributed to the setting up of local paediatric palliative care teams at nine out of ten medicine divisions in the South-Eastern Norway Regional Health Authority. According to the Ministry of Health and Care Services' 2020 instructions to the Norwegian regional health authorities, priority should be given to establishing regional paediatric palliative care teams (8). The Central Norway Regional Health Authority has earmarked NOK 1.2 million for this purpose while the Western Norway Regional Health Authority has started a regional network with similar funding. The Northern Norway Regional Health Authority has not yet taken any action.

Tailormade

Children and adolescents in palliative care present with very complex conditions, for instance pontine glioma, spinal muscular atrophy, leukoencephalopathy caused by perinatal asphyxia, congenital anomalies, hepatic, renal or cardiac failure. Repeated operations may be necessary as well as advanced examinations under anaesthesia, life-sustaining treatment such as tracheostomy, home mechanical ventilation, gastrostomy, pacemaker or parenteral nutrition over long periods of time.

While the child is on the transplant waiting list, in the paediatric intensive care unit or receiving respite care, the parents must carry on with their lives as best they can. The hospitals try to accommodate their needs. Paediatric and adolescent wards can draw on the services of affiliated child psychologists, social workers, physiotherapists, occupational therapists, music therapists, and hospital clowns, as well as offering pastoral care services, play therapy and hospital school. In some areas, the 'hospital at home' system provides advanced care that entails the specialist health service visiting the child at home. Last, but not least, the paediatric and adolescent wards have well established structures for the important cooperation with the local municipalities. It is within these structures that each child must receive tailormade, holistic health care services ((7); (9), p. 26).

In the child's best interests

Unfortunately, the paediatric and adolescent medicine divisions have not been empowered to offer cohesive organisation of the overall provision of services. Interdisciplinary work is resource-intensive (10). Several professionals must meet on a regular basis to create the cohesiveness that each particular child and family needs.

Freedom of choice means not having to travel to a paediatric hospice far away, but to be able to choose to stay where you live, surrounded by your loved ones

In line with the UN Convention on the Rights of the Child, children and adolescents who are seriously ill have a right to treatment by specialist health services (11). This also applies when a child is dying. Freedom of choice means not having to travel to a paediatric hospice far away, but to be able to choose to stay where you live, surrounded by your loved ones.

Fairness includes equal treatment opportunities and a responsible distribution of resources (12). Palliative care competes for the resources administered by the regional health authorities in the same way as life-prolonging immunotherapy, more MRI machines or new medications to combat cardiovascular diseases. In the revised state budget, the Ministry of Health and Care Services increased the basic grant to the regional health authorities by NOK 600 million with the primary aim of reducing patient queues and reducing the backlog in the wake of the COVID-19 pandemic (13). It was added that the funding should also be used to establish regional paediatric palliative care teams, as previously stated in the 2020 instructions.

We can only hope that the backlog caused by the pandemic will be limited, so there will be some funding left for children and adolescents in need of palliative care.

Literature

1.
Fraser LK, Gibson-Smith D, Jarvis S et al. Make Every Child Count. Final report, February 2020. York: University of York, 2020. https://www.york.ac.uk/healthsciences/research/public-health/projects/martinhouse/research/makeeverychildcount/ Accessed 14.10.2020.
2.
Dødsårsaksregisteret. 2020. Dødsårsaksregisteret. http://statistikkbank.fhi.no/dar/ Accessed 9.10.2020.
3.
Meld. St. 24 (2019–2020). Lindrende behandling og omsorg – Vi skal alle dø en dag. Men alle andre dager skal vi leve. https://www.regjeringen.no/no/dokumenter/meld.-st.-24-20192020/id2700942/ Accessed 14.10.2020.
4.
Bahus MK, Andersen S, Broen P et al. Organisering av det palliative tilbudet. Fædrelandsvennen 24.8.2020. https://www.fvn.no/mening/kronikk/i/b53k55/organisering-av-det-palliative-tilbudet Accessed 14.10.2020.
5.
NOU 2017:16. På liv og død – Palliasjon til alvorlig syke og døende. https://www.regjeringen.no/no/dokumenter/nou-2017-16/id2582548/ Accessed 14.10.2020.
6.
Cancer pain relief and palliative care in children. Genève: World Health Organization, 1998. https://apps.who.int/iris/handle/10665/42001 Accessed 14.10.2020.
7.
Helsedirektoratet. Palliasjon til barn og unge. Nasjonal faglig retningslinje. https://www.helsedirektoratet.no/retningslinjer/palliasjon-til-barn-og-unge Accessed 9.10.2020.
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Helse- og omsorgsdepartementet. Oppdragsdokument 2020. https://www.regjeringen.no/no/tema/helse-og-omsorg/sykehus/styringsdokumenter1/oppdragsdokument/id535564/ Accessed 14.10.2020.
9.
Meld. St. 7 (2019–2020) Nasjonal helse- og sykehusplan 2020–2023. https://www.regjeringen.no/no/dokumenter/meld.st.-7-20192020/id2678667/ Accessed 14.10.2020.
10.
Helsedirektoratet. Oppfølging av personer med store og sammensatte behov. Nasjonal veileder. https://www.helsedirektoratet.no/veiledere/oppfolging-av-personer-med-store-og-sammensatte-behov Accessed 14.10.2020.
11.
FNs konvensjon om barnets rettigheter. Artikkel 24. https://www.regjeringen.no/globalassets/upload/kilde/bfd/bro/2004/0004/ddd/pdfv/178931-fns_barnekonvensjon.pdf Accessed 14.10.2020.
12.
LOV-1999-07-02-64 Lov om helsepersonell m.v. (helsepersonelloven). §6 Ressursbruk. https://lovdata.no/dokument/NL/lov/1999-07-02-64#KAPITTEL_2 Accessed 14.10.2020.
13.
Helse- og omsorgsdepartementet. Oppfølging av Stortingets behandling av Prop. 117S (2019–2020) og Prop. 127S (2019–2020). Brev til de regionale helseforetakene. https://www.regjeringen.no/contentassets/bd8a11644b744dec8a8dc452794000e4/politikerbrev-l1715091.pdf Accessed 14.10.2020.

Comments ( 1 )

Dette kommentarfeltet modereres, men kommentarer blir ikke redaksjonelt behandlet ut over å sikre at de følger retningslinjer for vårt kommentarfelt.

16.10.2020:

Palliasjon ved medfødte og tidlige ervervede sykdommer handler ikke bare om barn i en forventet alt for tidlig siste fase av livet, men også om unge voksne pasienter med kroniske alvorlige og livstruende tilstander hvor det er stor risiko for død av interkurrente sykdommer eller forverringer av grunntilstanden. Mange av disse pasientene hører til målgruppene for habilitering i spesialisthelsetjenesten/nevrohabilitering og vil trenge ambulante tjenester fra tverrfaglige team. Disse må bidra til å legge til rette for at pasientene får være mest mulig hjemme eller i den institusjon hvor de bor og få leve et hverdagsliv innenfor sine kjente rammer med så lite sykehus- og nye institusjonsopphold som mulig. Samarbeid over tid med fastleger som kjenner dem og familiene er helt nødvendig.

Man løser ikke slike utfordringer ved å opprette enda flere kompetansesentre. Man burde slik jeg ser det heller bruke ressurser til opprustning av habilitering i spesialisthelsetjenesten i helseforetakene over hele landet. Spesielt legedekningen innen dette kompetansefeltet er flere steder kritisk lav og må opprustes for at slike helsetjenester skal få et minimum av kvalitetssikring og bli likeverdige rundt i hele landet.

Fagråd for Habilitering Helse Sør-Øst har derfor nylig anbefalt Det regionale Helseforetaket Sør-Øst å støtte oppbygging av lokale barnepalliasjonsteam på linje med anbefalinger i nasjonale retningslinjer og på linje med NOU 2017: 16 i sine helseregioner. Det ville kunne styrke kvalitet, kompetanse, samhandling, faglig omstilling og gode helse og omsorgstjenester i kommunene for personer med utviklingshemninger og kronisk sykdom som utgjør en vesentlig del av denne populasjonen.

Økt ressurser til slike team vil kunne bidra til kompetanseheving og tverrfaglig samarbeid med habilitering i spesialisthelsetjenesten både på barne- og voksensiden.

Barn og unge voksne med kroniske og livstruende tilstander bør få leve og avslutte livet der hvor de bor under tverrfaglig kyndig ambulant oppfølgning.

This article was published more than 12 months ago and we have therefore closed it for new comments.

Published: 15 October 2020

Tidsskr Nor Legeforen 15 October 2020 Vol. 140.

doi:

10.4045/tidsskr.20.0784

Received 1.10.2020, first revision submitted 9.10.2020, accepted 14.10.2020.

Published: 15 October 2020

Tidsskr Nor Legeforen 2020 Vol. 140.

doi: 10.4045/tidsskr.20.0784

Received 1.10.2020, first revision submitted 9.10.2020, accepted 14.10.2020.

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Private paediatric hospice – is it such a bad idea?

Norway is lagging behind

Tailormade

In the child's best interests

Barnepalliasjon og habilitering

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