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Development "Toolkit Palliative Care COVID-19 Patients at Home", thanks to transmural cooperation

Submitted by:
M. Blezer, Nurse Practitioner Palliative Care
B. Coenegracht, Nurse Practitioner Palliative Care
I. Jochem Bsc., Director Desired Care End of Life
P.A.G.M. Knapen Bsc, Coordinator Network Palliative Care
J. Timmermans, Bsc, Coordinator Network Palliative Care
F. Warmerdam, Internist-oncologist

Summary

In March 2020, at the onset of the Corona-crises in the Netherlands, professionals in the southern part of Limburg united in an existing transmural partnership regarding palliative care and created the 'Toolkit Palliative Care Covid-19 Patients at Home'. The Toolkit has now been adopted at the national level by the Dutch Association of General Practitioners (NHG), and the symptom control list (part of the Toolkit) has been published by the European Society of Medical Oncology (ESMO).

Background

For patients with a serious condition like COVID-19, intensive hospital treatment and possible admission to an Intensive Care Unit is not desirable. In the case that patients infected by COVID-19 are being treated at home, it is necessary to provide support in the best way possible. This Toolkit has been developed to support care providers working at patients' homes.

For some time, various projects have been running to pursue 'the Right Care at the Right Place' and ‘Care as home as possible’, promoting dialogue about treatment options between patients, their GP, and other caregivers. This is important for chronically ill or palliative patients, where curation is no longer possible.

In our region, an Advance Care Planning (ACP) project has been initiated by GPs, in which they talk with frail patients about their treatment and wishes in case of incidents/acute care situations. A Transmural Palliative Care Path: "Desired Care at the End of Life" was implemented three years ago with ACP leading and GPs having several conversations with recently identified palliative patients. The GP initiated conversations are meant to be supportive and constructive in these cases.

Recently, another linked project: ‘Time-Out procedure’, was introduced for patients after a ‘breaking bad news’ conversation with their oncologist: there are no cure-options left. These patients have a second, "time out-" and ACP-conversation, with their GP about available treatment options and how they can be individualized for their specific life goals and wishes. The treatment decisions can then be made afterwards by the patient and medical specialist.

With COVID-19, there is a wide variety of disease courses and outcomes. For those who become severely ill (about 6%), treatment is intensive. For generally healthy patients without significant frailty there is a good chance of recovering to a qualitatively acceptable life, and they should be treated optimally. The majority of these patients will be treated in a hospital where resources like supportive oxygen, medications and IV fluids are offered. If mechanical ventilation would happen to be necessary, patient referral to the ICU would be an option.

On the other hand, there is also a group of COVID-19 patients with a serious infection who are generally less healthy at baseline with several comorbid medical conditions. These patients may overcome a COVID-19 infection, but will often experience a significant decline in quality of life. In addition, these patients who are more frail and vulnerable at baseline have a greater risk of dying. Some patients do not survive due the severity of the COVID-19 infection itself, while others with moderate infection may not survive due to the combination of having pre-existing underlying conditions; in these cases, the chance of recovery after COVID-19 is minimal without additional support.

The aforementioned Toolkit has been developed to support GPs in consultation with their frail patients, who decide to stay at home if infected by COVID-19. Due to the very limited chance of recovery and the impact of the social distancing restrictions, these patients choose not to be admitted to the hospital in the event of a serious infection.

 Toolkit Content

The Toolkit contains various documents to support professionals in providing adequate care and maximum support to the patient at home. Through transmural coordination, logistical considerations for materials and resources have also been arranged.

Content of the Toolkit:

  1. A symptom control list: how to treat conditions like dyspnea, anxiety, pain, and palliative sedation for example
  2. A patient description designed for professionals to identify COVID-19 infection (at home)
  3. The phone-number for the Central Crises Center for Spiritual Support in Limburg: where patients, relatives and caregivers can call for guidance and support with spiritual questions, such as loss, grief and loneliness at the end-of-life
  4. A communication tool for conversations when wearing personal protective equipment (PPE), in order to access resources and quickly discuss matters related to patient care
  5. A talking-aid on conversations about end-of-life decision making and medical futility for doctors who do not have these conversations regularly
  6. (Extended) Accessibility data for the Transmural Palliative Care Team Zuyderland: Support can be requested quickly on how to provide optimal and adequate care and support

National and international attention

The Toolkit was initially distributed to GPs, pharmacists and homecare organizations in Limburg. Now it has been adopted at a national level by the Dutch College of General Practitioners (NHG). The Symptom Control list has also been translated and published by The European Society of Medical Oncology (ESMO).

Transmural cooperation

In times such as the COVID-19 crises, the great value of transmural cooperation emerges quickly. In the initial (sub)region, there is an existing transmural network regarding palliative care. For example, GP’s, medical specialists, specialized nurses, nurse practitioners, researchers, pharmacists, home care staff, and spiritual care takers have been working together on the project 'Desired Care at the End of Life'. Within its own sector, professionals keep in touch with colleagues at several levels. Therefore, quick proactive interference during the outbreak of COVID-19 infection in Limburg was possible. Two palliative care networks, from the south of Limburg, collaborated in the development of ‘the Toolkit’, and were represented by all partners in palliative care in these regions; thus, this created a complete platform of transmural care.

Process

The Toolkit was developed in only four days and then distributed regionally to GPs and Pharmacists. Despite this short period of time, the content has been carefully compiled and, moreover, has been reviewed by relevant parties in the Netherlands, who have provided broad coverage and input.

In addition, the team has developed COVID-19 patient profiles and referral flows on behalf of the GHOR South Limburg (Medical Healthcare Organization in the Region).

The Crises Team Transmural Palliative Care was responsible for coordination of the process, and they contacted all involved parties on a regular basis via digital media.

Conclusion

In times of crises, (pre-existing) transmural cooperation proves its value and should be continued as well as expanded in the post-crises era.

Fabienne Warmerdam, voorzitter, Internist-oncologist, Zuyderland
Wilbert Dominicus, GP, Westelijke Mijnstreek
Mirjam Willemsen. GP, Oostelijk Zuid-Limburg
Geerten van Riet, Clinical Geriatrician Zuyderland
Riet Janssen-Jongen, Elderly Care Physician, specialized in Palliative Medicine, Zuyderland
Mark Martens, Elderly Care Physician, specialized in Palliative Medicine, Zuyderland
Monique Blezer, Nurse Practitioner Palliative Care, Zuyderland
Benedicte Coenegracht, Nurse Practitioner Palliative Care, Zuyderland
Marij Schielke, Specialized palliative nurse, Meander Thuiszorg
Els Knapen, Coordinator Network Palliative Care, Westelijke Mijnstreek
Inge Knapen Translator
Jolanda Timmermans, Coordinator Network Palliative Care, Oostelijk Zuid Limburg
Inge Jochem, Director Desired Care End of  Life  /  DementiaNetwork, Westelijke Mijnstreek
Hans Cremers, Outpatient Pharmacist, Zuyderland
Adrienne de Brouwer, Pharmacist, Westelijke Mijnstreek

Acknowledgements

Acadia Pharmaceuticals Otsuka Pharmaceuticals Cambridge University Press Avanir Pharmaceuticals
CORPORATE COUNCILS