The role of Telehealth in synthesizing Palliative Oncologic care
Careyn Home Care, The Netherlands
The development of a Palliative Oncologic care path
Palliative care approaches improving the quality of life of patients and their families facing the problem associated with life-threatening illness through preventing and relieving suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. This Telehealth initiative has attempted to include this broad interpretation within the “care path,” with the nursing approach of the patient forming a holistic viewpoint. Fluctuation of patients’ symptoms and therefore their needs asks for a quick and adequate response of oncology nurses. Our current care consists of home visits and telephone consultations, based on a global estimation of upcoming suffering of symptoms. In between contacts quite often the patient’s situation deteriorates, sometimes leading to admittance into a hospital. Questions have arisen on ways to avoid this scenario. We have developed a way to communicate via “screen-to-screen” through the use the Personal assistant for Life (PAL4). This was developed by Careyn Utrecht together with other healthcare organisations and Cura Healthcare Innovation (www.focuscura.nl). This pilot program includes 15 patients.
What is the Telehealth intervention and how does the technology work?
Personal assistant for Life (PAL4) is a concept which is meant to facilitate living at home as long as possible, preventing admission to a nursing home. In place since 2006, and implemented in more than 25 Dutch healthcare organization, it is based on the idea of focusing on creating an environment where people have social contacts once again. In this community informal and formal care is available. People can have a chat with anyone using PAL4. They can find the necessary information on activities in their own community as well as on their health. It also contains news, a lot of games and you can browse on the internet.
One of the main issues in the care path is the digital Utrecht Symptoms Diary (USD), which we integrated completely in the PAL4 system. The diary has been developed based on research and the existing ESAS (Edmonton symptoms assessment schedule) questionnaire. It informs the nurse about the medical state and mental state of the patient. Patient and nurse agree upon the frequency to fill out the digital questionnaire.
The symptoms diary and screen-to-screen consultation are two major components of our palliative care path. Specifically designed for elderly people, the device consists of a computer with a touch screen. In the near future, we will be moving to include the use of tablets. The symptoms diary and screen-to-screen consultation are joined by a digital information set that is available to all patients with a focus on well-being and general self-management items. Subjects like nutrition, relaxation, energy and emotions are dealt with in a down to earth, friendly style in an environment of warm colours and friendly pictures. PAL4 also has special COPD and Diabetes care programs.
Family care-givers can find information to suit the specific needs of the patient through functions like the “family-caregiver” touchscreen button and a “chapters systems.” This information set has been written in collaboration with renowned organisations working regionally and countrywide for the benefit of cancer patients in the Netherlands.
Outcome of Telehealth intervention
The oncology nurses give screen-to-screen consultation twice a day when necessary, in addition to also being available by phone. Ben, one of the oncology nurses involved notes, “We are learning each day to make the best use of this new approach to nursing. Frequent use of a symptoms diary in conjunction with screen-to-screen intervention brings new possibilities for professional caregivers but also poses new questions to us. It is important to facilitate the patient to contact us. It is impossible and not even desirable, to catch every symptom or question with the USD. These people are in the most vulnerable stage of their life. To listen to the patient and support him dealing with his problems and concerns is what we do. Technology can be a great help in that, no more than that.”
Implementing the PAL4 approach has involved finding a healthy balance between in-person and screen-to-screen interaction with patients, on the part of healthcare providers. As Ben describes, “Do we dare to be outspoken towards patients and families in bringing screen-to-screen appliances to their homes? We had to let go of our natural hesitance to intrude in daily life of our palliative patients. This is a still on-going process. Also, we are beginning to appreciate more how to use screen-to-screen generated patient information combined with the experience of home visits. On the one hand some topics can be addressed better in the intimate setting of a home visit. On the other hand we also find that in the process of getting to know our patients, the screen-to-screen contacts are more easily used for discussing sensitive topics.”
One of the people involved in the pilot, Mr. van Dijk (61) has had diabetes for 29 years now, and 11 years ago was diagnosed with lung cancer, in additional to recently having a heart attack. He stays at home a lot, but still wishes to be part of the community. So far he has found the PAL4 system quite appealing.
The service brings advantages to both patients and professionals. As Ben concludes, “The results help me to make a picture of the situation of the patient. If he [Mr. van Dijk] feels worse I will contact him more often or I will arrange appropriate help for him. For patients it’s a tool which helps them recognise the symptom or its pattern earlier. The signal comes sooner now, so I can advise more adequately. It also gives the patient information about his own situation, which can be taken to the general practitioner.”
The economics of the Telehealth device
There is no scientific outcome yet as to items like cost savings, improved quality of life or reduction of hospitalizations. It would require a much larger group of participants to do comparative scientific research. For Careyn as an organization, aside from the quality of care, cost saving is an important notion in implementing e-health care. At this point in time, specific patient groups are defined, each of which can get access to a specific “care-menu” that consists of a mix of house calls and screen tot screen contacts. In the future, this will result in a well-fitting, cost effective package for each group.
For further information
Ben Berkvens, Oncology Nurse
Bea van Stappershoef
+31 3 02 588 212