End-of-life repatriations

Comforting hands
Last flight home

Tatum Anderson explores the complexities involved in organising these most sensitive of operations

A patient being treated at a Kenyan hospital was nearing the end of her life. Her next of kin requested that she be taken home to the US to die. The insurance company and the medical evacuation company agreed to comply with their wishes, but during the routine wing-to-wing transfer arranged to take her home via Iceland, things began to go wrong. 

The medical team on the receiving plane refused to transport the patient as she was so ill, and insisted she be taken to a nearby hospital for stabilisation. Despite the pleas of the evacuation company and the family, the patient was taken to hospital in the capital Reykjavik.

“It was very much out of our hands to influence this,” said Bettina Vadera, CEO of AMREF, the medical evacuation and assistance company that undertook the first leg of the journey. While the patient stabilised, a snowstorm hit the country. Take-off was delayed and the lady died in hospital. “It was all very tragic because she was only halfway home,” said Dr Vadera. “It was a big disappointment and there was sadness all around. These can be very challenging flights.”

Yet despite the obvious risks, repatriating patients at the end of their lives is not unusual. One study on this subject, published in the Journal of Clinical Oncology, looked at repatriation at the end of life from a tertiary cancer centre. Ros Taylor, of the Royal Marsden Hospital in London and author of the study, concluded that there is often a spiritual imperative for some patients to return to their nation of birth, once treatment is stopped and mortality accepted. “Getting home or returning to the country of birth can become an overarching pre-occupation for the patient, family and team,” she said. “How people die lives on in the memory of those who survive. It is therefore pivotal for palliative teams to help craft an ending in line with patient and family goals.” 

The effects of flight
But travelling can put a great strain on the human body. The stress of transport alone may mean the patient does not make it home.

Dr Simon J. Forrington, Medical Director of Capital Air Ambulance in the UK, explained how the flight environment is physiologically very stressful. There are the physical forces placed on the body during take-off, landing and in-flight, a relatively confined and noisy cabin, and vibrations that can lead to motion sickness, fatigue, stiffness. There is also decreased humidity – dry cabin air – and the potential for lines and equipment to become disconnected or malfunction.  

To make matters worse, some conditions can be exacerbated by flight. Trapped gases in the body – through bowel obstructions, air bubbles from recent surgery or collapsed lungs – can expand in-flight and can cause much pain. Patients who require high-flow oxygen may become hypoxic in flight. “Healthy people have enough physiological reserve to cope with that, but this reserve is greatly reduced in illness, especially in patients nearing the end of life,” he stated. 

Despite the obvious risks, repatriating patients at the end of their lives is not unusual

Diana Iaquinto, Director Medical PPS & Provider Relations at Latitude Air Ambulance in Canada, highlights barometric pressure and its effects on lungs and ears and sinuses, and adds turbulence to the list. But, she says, the effects aren’t only on the patient. “There are so many issues that can occur for all patients, let alone those that are already in end-of-life situations. These stressors can affect everyone on board,” she said.

The last flight home

Flight limitations
Besides the physical stressors associated with flight, resuscitation resources during transport are also more limited than in a hospital setting, added Iaquinto. Therefore, air ambulances must carry a defibrillator, IV pumps, ventilator, suction, and oxygen at bare minimum. “So, staff choices can be crucial,” said Iaquinto. “We recommend using ICU and ER-trained medical staff and the team can be any of the following:  a doctor (MD) and registered nurse (RN), MD and RN and respiratory therapist (RRT) or a RN and RRT.”

Dr Eugene Delaune, Chief Medical Officer at Generali in the US, highlighted that there are limited or no resources for lab tests or x-rays, or access to specialist care to assess and treat the patient should there be deterioration in the air. That’s why it’s so important that the onboard team assess how far the patient’s needs can be met during transport. “If the patient is dependent on medical devices, is it possible to use these devices during transport? Is the patient’s condition rapidly evolving, where it will be difficult to predict exactly what care they may need inflight?” he said. 

Because of the risks, it’s vital that everybody – the assistance company, patient and family, insurer and the receiving facility – are all fully aware of what’s being done for the patient and any intervention plans.  

Risk assessment
Importantly, the family must understand the potential risks of transporting their loved one. “It needs to be clear to the patient and family that their condition could worsen or they could perish during transport,” said Dr Delaune. “We usually ask that the patient be made DNR (Do Not Resuscitate) prior to travel, acknowledging that resuscitation resources during transport are more limited than in a hospital setting.”

A DNR is often necessary because if a patient is nearing the end of their life, attempts at resuscitation, such as CPR, are unlikely to be successful in the event of a cardiac arrest, according to experts. ”If a patient is ‘very critical’ then we will do everything we can because it’s not ‘end-of-life’,” said Denise Waye, President of AirCare1 in the US. “If we are taking people on [an end-of-life flight], we are not going to resuscitate because we know this is end of life.”

That’s why such missions require a great deal of sensitivity and planning, according to Capital Air Ambulance’s Forrington. “Circumstances that mean a patient absolutely cannot travel are fairly rare. However, there are degrees of risk,” he said. “As long as all parties understand and accept the risks involved, generally speaking we will help whenever we can.”

A DNR is often necessary because if a patient is nearing the end of their life, attempts at resuscitation, such as CPR, are unlikely to be successful in the event of a cardiac arrest

His company carries out a risk assessment based upon the current clinical condition of the patient, the length and nature of the transfer, how the patient will be transferred – aircraft and ground ambulance for example – and an appropriately skilled team. Understanding the underlying condition, its complications and the natural history of the illness helps too. The risk assessment allows them to assess what, if any, physiological reserve the patient has. “Each mission is planned and conducted on a case-by-case basis,” he said. “We need as much detail as possible from medical reports, the patient, and family members, in order to make a full risk assessment.”

Experts in this kind of repatriation say the receiving institution – whether it’s a hospital or hospice – should be fully appraised of the patient’s clinical status and should have provided prior agreement and a bed to which the patient will be immediately transferred.

Not fit to fly
Special end-of-life flights are often not paid for by insurance companies but are rather privately organised by members of the patient’s family, explained Dr Gert Muurling, Group Medical Director at Air Alliance Medflight in the Netherlands. “[As such], often we will not receive an extensive medical report with the patient’s history and evolution over the past three weeks; sometimes, it is just a picture of medical information taken with a mobile phone,” he said. “The family may be overwhelmed with decisions, and not understand the environment well, such as the terminology of ‘fit to fly’, limitations in aircraft size or whether they can accompany the patient.”

Muurling agrees that a meticulous medical pre-assessment is vital. “There may be a minimal risk that the patient will pass away before reaching the final destination,” he said. “We do only accept a terminally ill patient if his or her condition is stable enough to survive the flight. Anything else would be irresponsible and not ethical,” he said.

He also warns that – depending on the destination country – if a patient dies on board, it could lead to the immediate arrest of the medical team by local police on landing. “In any case, a forensic pathologist will need to perform an autopsy and relieve you of the accusation of having caused the death,” he said. 

Discussing sensitive issues

Team training
Providers say it is important that the flight team is trained on how to react if a patient passes away during a flight. AirCare1’s Waye says they may also need time off from work after the mission.  “Even though we are trained professionals and we know how to handle death, you have to let the flight crew decompress because it’s just hard and everyone is kind of sad,” she told ITIJ. “We give them an extra time out and have a chat with them and make sure they are okay.”

As the situation in Iceland showed, there can be disagreements as to whether a patient should be taken home. AMREF’s Vadera said there was nobody to blame in that case, however. “It is a case that has been discussed many times to decide what would have been the ideal scenario,” she said. “These are the kinds of cases where we all learn.”

Indeed, the Journal of Clinical Oncology study revealed the difference in anxiety levels between treating medical staff. Taylor said nurses were more anxious than doctors and that patients and families expressed the least anxiety. In addition, there can be a knowledge deficit regarding fitness to fly, whether an escort was needed, the respiratory and metabolic effects of flight, and how to maximise wellbeing on the journey. “The practical anxieties of health professionals often act as delays to repatriation at the end of life,” she concluded.

Cover complexities
If a treating doctor does not agree to a patient being moved, repatriation may not be a covered benefit until they sign off on the transfer. There are policies that stipulate that the treating and assistance medical directors must agree on travel plans, too. “Generally, if a treating team at the destination or the resort do not think it safe or reasonable for a transfer to happen, then one would need a compelling reason to go against that judgement,” said Forrington. 

As long as all parties understand and accept the risks involved, generally speaking we will help whenever we can

The assistance company involved may decide to send a doctor to visit the patient in order to make their own assessment in such cases, prior to a transfer taking place. “This is a difficult area,” added Forrington “It is not black and white and when disagreement does occur; we do sometimes act as a mediator or offer an additional opinion, should we be asked to do so.” 

Even when agreement is reached before the flight – following high-level discussions of pros and cons with all stakeholders, with a DNR order in place, and agreed measures regarding what will or will not be performed on the patient and expected of the crew – all bets can occasionally become off when the patient’s condition deteriorates in the air. Latitude’s Iaquinto explained: “The situation sometimes becomes compromised if the patient starts to decline. If there is a [family] escort onboard, they now want everything to be done for their loved one and to not uphold the DNR,” she said. 

She recommends listening as much as possible in advance of the flight. “It’s having an understanding of the culture of the family you are dealing with – this can have a huge impact as to what will/can or cannot be done,” she added. “Prepare for the worst and hope for the best. Be open and have honest expectations.” 

Final choices
While many end-of-life flights take place because people want to return home, others want to be taken elsewhere; for example, because they think there is a wonder drug or treatment available in a particular destination. Generali’s Delaune said his company is occasionally asked to evacuate patients to a different country, because the patient’s wishes run at odds with the laws of the country on end-of-life decisions. “They and their family want care withdrawn, but legally and culturally this is not allowed at the patient’s location,” he said. “We have, for example, evacuated a patient from Italy to Germany for this reason.” 

There are patients who might want to be transferred to Dignitas in Switzerland, a clinic specialising in assisted dying. But it is illegal for many companies operating in countries that do not allow assisted suicide, like the UK, to transport them. Providers in such countries thus say they would not undertake such flights. 
And, while some patients are diagnosed with a terminal condition while abroad, others know they are dying before they set out. AirCare1’s Waye said she has repatriated patients who’ve embarked on once-in-a-lifetime trips to make the most of the time they have left: “Sometimes your mission is just to get them home, even though they pass away. And we respect that.”