Advanced care planning in palliative care should include discussions around patients’ digital legacies, according to speakers at this year’s online Marie Curie Research Conference 2023.
Digital legacies include a person’s online activity, photos, blogs, social media, music and gaming profiles, and may be of monetary or sentimental value. This legacy allows connections to be maintained after death. However, it is not always possible for loved ones to access a person’s digital legacy after their death, which could have a damaging effect on grief and bereavement.
Patients can be empowered by encouraging conversations about who should manage their digital legacy, similar to a power of attorney. Some may wish to manage the legacy themselves. These need to be timely conversations while the patient is well enough and still sounds and behaves like themselves.
The speakers said that more needs to be done to raise awareness and educate healthcare professionals on the importance of introducing digital legacy conversations. Importantly, children can play a role, as they are often more technologically aware than older generations and can help them put their memories together.
Sarah Stanley, a nurse specialist at the Marie Curie Hospice Liverpool, UK, says it is also important to have conversations with social media companies who own digital data, while clarifying with patients what they want to happen with their social media accounts after their death. “Do they want to download all the photos and shut the account down, or do they want to pass their passwords to someone else to manage them?”
Amara Nwosu, research lead for Marie Curie Hospice Liverpool, adds that, historically, we could easily follow our ancestry through photo albums and journals. This will become more difficult in the digital age unless more is done around digital rights awareness.
Other digital health interventions are also used within the palliative care setting. Examples include:
- Symptom management: virtual reality, telehealth/telemedicine, remote bereavement support.
- Observation and assessment: basic science for analysing patient genetics to determine if opioid analgesia could benefit one person more than another. Analysis of urine samples to identify biomarkers to assess the dying phase of patients with lung cancer.
- Education and support: online conferences, social media and telehealth for educating medical students.
- Data analysis: artificial intelligence, machine learning, chatbot, deep learning algorithms.
All aspects of digital interventions in palliative care need further research. Advice on how to approach patients regarding their digital legacy can be found on the digital legacy association website.
