Navigating Digital Legacy as a part of End-of-Life Care Planning

Navigating Digital Legacy as a part of End-of-Life Care Planning

– Mr Sachin Dwivedi, Rishikesh

A person’s ‘digital legacy’ is the quantity of electronic data that one leaves behind on digital media and the internet upon their death. This could include one’s email accounts, websites, blogs, online chats, financial accounts, images, videos, online gaming profiles, social media accounts, online trading accounts, Intellectual property domains, etc.

I was motivated to work towards sensitizing patients and their families regarding one’s digital legacy after a personal experience. Anand (name changed), my friend, and I connected rarely on social media during the year. However, every year on our birthday, we remembered each other and sent each other warm wishes. One very unfortunate day, he met with an accident and passed away. Six months after that, it was his birthday. His social media profile was very much active and was filled with wishes for his long life and prosperity. I felt horrible reading those messages!

It was then that I realized that in today’s digital world, one should always design and have in place a plan towards managing one’s digital legacy.

A palliative care nurse’s proximity in working with patients (and their caregivers) who are suffering with a life-limiting illness provides us with the privilege and opportunity to play a pivotal role in sensitizing and thereafter navigating patients and their caregivers towards planning the digital legacy of their loved one. It is important to note that a person’s pre-death interactions and access to information frequently influence decisions regarding their digital legacy, which creates for us, the nurses, with an excellent opportunity to positively influence their decisions in this area.

In addition to actively working towards generating awareness about digital literacy, I also provide the necessary support needed by a patient’s caregiver to manage the digital legacy of their loved one.

   The role of a palliative care nurse in supporting the planning the Digital legacy of their patients:

1. Nurses can encourage their patients to compile a comprehensive list of online accounts and digital assets.
   • This checklist should include information such as usernames, passcodes, email, and Phone numbers associated with the accounts.
   • Resources such as a Digital life Will Template or a Digital Assets Checklist can help in this.
2. Nurses can sensitize and make sure patients document PINs or passcodes for their hardware such as their smartphone, external storage device, or computer.
3. It is also very important for nurses to ask their patients to think about how they would want their digital information to be managed after they pass away.
   • Nurses can ask their patients to consider options such as downloading and storing the information, or if they would prefer to have their digital account’s deleted / removed / provide others permissions to handle it.
   • Nurses can also highlight to patients that they can choose different individuals as per the person’s skill set to manage their digital information. eg. One particular individual might be more appropriate for handling social media details while someone else might be more appropriate to organize and distribute valuable family memories including photo albums. Patient’s must be made aware that leaving a list of desires simplifies things for the family.
4. Nurses should also sensitise patients that once they prepare the document detailing plans for their digital legacy, it is equally important to inform the location of this document with someone they trust. It might be stored at a safe and secure place at the patient’s residence or with an attorney.

It is therefore important to note that building one’s digital legacy is an intelligent method to guarantee that one’s wishes and preferences regarding the management of one’s digital data is recorded and adhered to. We, palliative care nurses, can advocate and navigate patients towards creating their digital legacy. Through this activity we can help create lasting imprints of a patient’s existence and also offer solace and happiness to their cherished ones. As a palliative care professional, I urge all my colleagues to consider this aspect to also be an important part of our duty while caring for our patients.