Asking patients ‘what matters to you if time is short?’ is a cornerstone of palliative care. An easy question, but sometimes the answer is difficult to hear. Action is an essential component of compassion, and acting on the answer to this question can be a challenge!
What if the answer to the question is ‘I want to go home, not to my flat in Uxbridge, but to my real home where I grew up, where my memories are, where many of my family still live.’
This is increasingly common, as we work with global populations from diverse backgrounds. We are encouraged to ask that question about ‘Preferred place of death’ or ‘PPD’, but are not always prepared to act upon the answer. Travelling ‘home’ when you are very ill, going back to the country where you were born, can be a really difficult practical task but so important to explore.
Shirley is just 36, with a husband and two delightful sons. She tragically has advanced cancer and was desperate to go back to Goa, India where most of her family still live, to face the final chapter of her life. She was not well enough for cancer treatment, and her prognosis could be measured in weeks….and Christmas was coming.
Repatriation is complicated. Funds have to be raised, the logistics are complex, airlines have to be battled with, the patient has to be kept stable until the day of the travel and, of course, it is imperative to organise safe and expert care at the other end.
We have now done this several times at Michael Sobell Hospice since we re-opened in 2020. Adventurous journeys to Kerala, to Mecca, to Romania and to Euro Disney have made a huge spiritual impact on patients, families and our staff! All journeys have been planned by the Hospice team, funds have been raised in different ways, WhatsApp has been a key safety and communication tool during the journey, and risks have been managed rather than seen as a barrier to travel.
The money to support Shirley’s trip was raised through an extraordinary Go Fund Me effort, supported one of our doctors and the Goan Welfare Society. Over 400 generous donations raised £16,800 in just a few days! An active blog on the Go Fund Me page raised the tension and drove the donations. Every penny of the fund has been used to support the expensive Christmas flights for the family, the cost of flight nurse Ani, a private ambulance to Gatwick via Steve at Aero Medical, and some of the care costs in Goa.
Shirley has complex symptoms, involving tubes, infusions and a robust pain regime requiring frequent attention. She decided that rather than be cared for at home by her sisters in Goa, she would prefer 24/7 care. Through contacts and research, we identified the Dilasa Palliative Care Centre in Ponda, an hour from Shirley’s home. WhatsApp conversations were started with their medical team who have been amazing in their response to support Shirley. They promised not only a bed, but that they would collect Shirley from Mopa International Airport with their hospice ambulance and a palliative nurse.
There were endless calls with the London office of Air India who were extremely compassionate in their approach to find the safest solution for travel. Their 12 page Medical Information Form (MEDIF) was completed! We managed to book tickets for Boxing Day. Business class tickets had to be booked so that Shirley could lie back and sleep during the 9 hour flight, with her flight nurse beside her. We used Steve at Aero Medical and his trusted paramedic team to get Shirley airside at Gatwick, and he helped us identify a flight nurse who was free to go at short notice. Repatriation always involves ‘short notice’!
We sent 4 weeks worth of Shirley’s medication with her to ensure that her pain and symptom regime was continued in Goa.
There were risks of complications (bleeding, clots, collapse) but luckily there was no drama and the plane landed safely in Goa. All these risks had been discussed and a Flight Care Plan agreed. Shirley was met off the plane by the Dilasa Hospice Team and was transferred to their Centre. Dilasa means comfort and consolation and we have seen that in action. We are now in close touch with the medical team at the Centre to agree the next phase of care. Shirley’s husband and two young sons travelled from London to Goa on cheaper flights and were re-united with Shirley at the Hospice.
Shirley has a really deep faith and her one wish was to see her sisters and family whom she has not seen for over 2 years. We are now hoping for peace and comfort in the coming days.
In 2019, I interviewed the bereaved family members of patients we had repatriated and the impact was profound. Comments such as ‘He reconnected with his old life’..… and ‘It made such a difference to our grief’…and ‘It made it easier for us to accept her death’.
I learnt three things from these interviews:
- That the anxieties of health professionals often act as barriers to repatriation at the end of life and this causes significant delay, and the moment will be missed.
- Checklists to facilitate these journeys would ensure that the process does not need to be re-learnt each time
- Achievement of spiritual goals for a loved one is hugely important, not just to the dying patient but to those who live on with the memory, including the staff who make it happen.
- We have learnt at Michael Sobell that repatriation takes a little courage, some detailed planning and a lot of money – but makes a huge difference to those who wish to be back where they feel they belong!
We are hoping for a partnership with the Dilasa Centre in Goa, and maybe even an exchange visit to Goa!
Dr Ros Taylor MBE and Dr Helena O’Driscoll
Medical Team at Michael Sobell Hospice, West London
References
Collier A. et al. The meaning of home at the end of life: A video-reflexive ethnography study. Palliat Medicine2015; 29:695-702
Flying Home Hospice UK publication 2017.
Pallium India https://palliumindia.org/clinics/goa
Harlington Hospice website
https://www.harlingtonhospice.org/touch-and-goa-shirleys-christmas-journey/
Go Fund Me link https://www.gofundme.com/f/shirley-to-go-home
Photos documenting Shirley’s journey back to Goa
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