BLOG: Hospices across borders

St Luke’s Digital Communications Officer Gabby Nott currently works for us remotely from Las Vegas, USA. She has been exploring what hospice care looks like on the other side of the Atlantic Ocean.

Sin city, the place of roulette wheels, palm trees and endless sunshine.

Venture away from the bright lights of the strip and just like any other big city, hundreds of people are living with a life-limiting or terminal illness. Death does not limit itself and wherever you find yourself in the world, sadly you will also find death.

As Dame Cicely Saunders championed the modern hospice movement in London back in the 1960s, before taking it overseas to America with the first hospice in the USA established in 1974 in collaboration with Florence Wald, it seems fitting to be following the trail of hospice care from Plymouth to Las Vegas.

This comes as this last week it hit the headlines that former American President Jimmy Carter, who at 98 is the longest living president in American history, is receiving hospice care at his home in Georgia.

Almost half a century may have passed since the pioneering movement settled in the States, but today the strength of hospice care is scattered across Las Vegas, with around 79 hospices providing end of life care on a daily basis.

I was surprised to hear how many hospices there are within the city. It hit home how privileged St Luke’s is within its community of Plymouth, the South Hams and South East Cornwall, being a focal point for so many.

Hospice Las Vegas

I paid a visit to two of the leading hospices in the Las Vegas area to discover more about their work and palliative care this side of the Atlantic Ocean. Having lived in Vegas for the last couple of years I have witnessed the private healthcare system in full force, where each individual is responsible for having their own health insurance, which can be hugely dependent on income. This means that the hospices here rely on the insurance pay-outs to pay for the care, with many working for profit and having to pay tax on these funds and provide a financial return to shareholders. This is in contrast to St Luke’s, which is only partially funded by the NHS and therefore relies on the generosity of our supporters. I was intrigued to see how this model of hospice care differs from our own.

Hospice Las Vegas

Nathan Adelson Hospice is the only non-profit hospice in Southern Nevada and is the longest established, starting their home care back in 1978 before opening the area’s first inpatient hospice in 1983. I met with Director of Admissions and Transportation, Ashley Earle, who gave me a tour of their main hospice building, located just a few streets away from the world-famous Las Vegas boulevard.

Tucked away in a rare pocket of greenery, the hospice felt like an oasis of calm on first appearance, a stark contrast to the intensity of the nearby casinos. I was instantly transported back to our specialist unit at Turnchapel as I walked through the doors, with an in-memory display adorning the walls, similar to our beloved memory tree, with each leaf representing someone special we have cared for.

The building itself is laid out in different quads, each with private rooms leading out onto a patio, providing patients with easy access to fresh air and the famous blue skies of Vegas. In the middle sits a serene garden, with running water providing a peaceful backdrop for patients and families to sit and reflect in.

Ashley tells me that they’re currently providing care for 338 patients, across the two inpatient units and in the local hospitals, but with the majority seen in the comfort of their own homes. Like St Luke’s she describes their various nursing teams, including their inpatient and homecare nurses as well as their admissions team, who work in the hospital responding to referrals and doing evaluations before passing on the care to the homecare team once a patient is transferred home.

Hospice Las Vegas

Ashley is not a Vegas native, having moved to the area from Plymouth, Massachusetts (a fitting coincidence) but like many of the patients they see, it was the bright sunshine that drew her west.

“I moved to Vegas three years ago to come and get some sunshine,” she explains. “I started working for a hospice back in Massachusetts when my mother was receiving hospice care and saw the amazing work that was being done and thought I want to be part of that. I worked for an inpatient unit and thought this is it, this is my calling. I wanted to move here, get some sunshine and work for Nathan Adelson. There were no ifs or buts about it. We’re the only non-profit hospice and that makes a huge difference. The hospice is so established in the community. Vegas is a really interesting market for hospice care, there’s a lot of competition, it’s very transient, so we have a special place here.”

It is not just Ashley that was drawn to the bright lights of Vegas, many of their patients specifically travel to the city to live out their last days in a place that is special to them.

“It’s really unique here in Las Vegas, it’s a very important place for a lot of people. We have patients coming over from Hawaii. We had a patient here who was a very big poker player and he wanted to come to Vegas one more time and win a lot of money so that his family were taken care of and that was something the hospice was able to help with. We’re in a fortunate position that we can provide hospice care for a lot of people who are travelling here. It makes a huge difference for people who want to make that one last trip. It’s a special place for so many. We prioritise our community but we won’t turn anybody away. If they need us, we’re there.”

As a non-profit, the insurance only covers the cost of the care, so they rely on the generosity of their local community to help provide their patients with a full range of support services as well as covering the cost of about 20% of the patients, who they see that have no insurance.

Like St Luke’s flagship events, Men’s Day Out, Midnight Walk and Tour de Moor, Ashley describes how they also work with the community to host different events to raise funds for the hospice. “We have a fashion show every year which is our biggest fundraiser and we also have a Doctors in Concert that’s another big fundraiser, along with a regular wine tasting event. Just things that the community looks forward to year after year. We also do a butterfly release in early spring where you can donate and purchase a butterfly in memory of a loved one. It’s really beautiful.”

Ashley tells me about one programme that was introduced using the money raised by donations that involves robotic pets – ‘Paws at home’ – I was intrigued to hear more. “We have a ‘Paws for Paul’ pet therapy service set up by the foundation through donations,” she says. “As well as therapy for patients, it helps us support pets while our patients are on service and helps with rehoming if needed when a patient passes away. Paws at Home is an extension to this programme, with robotic cats and dogs which are normal size and can breath, purr or bark and their heads can move. It’s so comforting for those patients with Alzheimer’s or dementia who just need a little bit of companionship.”

As many are aware, death and grief come hand in hand and wherever a hospice is, bereavement soon follows. At St Luke’s our social care and support team provide bereavement support to both adults and children who are experiencing a loss. Ashley describes how they also commit their time to supporting children who are coming to terms with losing a loved one.

“We do a lot of work for bereavement. We have a camp that is one of my favourite things that I was able to participate in last summer. We go up to the mountains for the weekend with 30 kids, their loved one might not have necessarily passed away in our service, it is open to the community. They have a weekend in the mountains where they have a lot of fun, but also do grief work. It was one of the most powerful things I have been involved in and was something I felt really proud of. It was really special and put things into perspective for me.”

During my visit, I was able to steal a minute with one of the staff nurses on duty that morning, Annabelle Buynay and find out what drew her to working in hospice care.

“I find working in hospice care really rewarding,” she explains. “I’ve been in different care settings, but have found I prefer to work in a hospice as I feel like you do more patient care and working with families a lot more. You have more time to spend with patients.

“When I was in nursing school, I didn’t want to do hospice care as I thought it would be too depressing so I steered away from it. Then I got introduced to it when I was working in skilled nursing, working in long term care and I got to work with hospices and I thought this is what I want to be doing, rather than just passing meds. I feel like you’re paying more attention to their needs, treating their symptoms and providing education to the patients and their families. I thought this is what nursing should be.”

I left Ashley and Annabelle feeling a spread of warmth that is relatable to anyone who has been in the company of any of our St Luke’s care teams, witnessing a passion for providing patients with the highest quality of care and dignity when they need it most.

Having met the non-profit hospice, I wanted to pay a visit to a for-profit hospice, to witness the difference between the two.

CompassionCare Hospice is one such Vegas hospice. Lying in the quiet suburb of Summerlin – popular with families and sprinkled with restaurants and shopping areas – it is a far cry from the reputation that has come to be associated with Vegas. Ranked in the top three of hospices in the city, they pride themselves on being there for the patient, providing them with a peaceful end of life experience in a familiar and secure environment.

I met with Director of Education and Community Relations, Julie McIntosh and Executive Director Jennifer Wantoch. CompassionCare’s main services are provided by clinical teams in patients homes or assisted living facilities, with links to several of the main hospitals in the city as well, to be on hand when a patient reaches end of life. While they don’t have an actual hospice in-patient unit, they instead are contracted with about 30 different facilities across the city.

Julie explains that 90% of all their patients are funded by Medicare, the federal health insurance program specifically for people 65 and older. But they won’t turn away someone who can’t afford to pay the insurance. “We’ve been here 18 years and we take more gratuitous patients on average than the other hospices,” she says.

Jennifer describes the care they deliver: “A Medicare condition of participation is that every hospice has to offer four levels of care – routine home care, continuous care where we will put a nurse at a patient’s bedside if the systems can’t be managed, general inpatient care and respite care. We look after about 200-250 patients at any one time and usually patients are seen one to two times a week.”

It highlighted to me how lucky we are to be able to provide care free to our patients, but that is down to the incredible supporters we have, who go above and beyond raising more than £7.8 million a year to keep our services running.

Beyond the initial care, a key part of their work, like our own is breaking down the taboo around death and educating patients, communities, loved ones and carers. Julie explains: “Every time you have that opportunity to go into that patient or care giver’s home, you can help provide guidance and technical help to make their lives easier and answer any questions they have.” They also work closely with other local organisations to help spread awareness and understanding of what hospice care is.

Like Devon, Vegas is often regarded as a retirement oasis which means the need for hospice care is steadily increasing, and we know first-hand it can be a challenge to keep up that demand.

“We have a huge senior population here in Las Vegas,” Julie explains. “People come out here to retire and we have several military bases, so we have a large veteran population. Therefore we have a higher than average senior population, with Alzheimer’s and dementia being in the number two spot for terminal illnesses below cancer.”

However, because of the high number of hospices in the city, it becomes a challenge to find their footing within the community.

“There are 79 active hospice licenses in Las Vegas alone. New hospices open every day and hospices close very frequently too,” Julie says. “The challenge is providing that level of high patient care but also differentiating yourself and being able to be competitive. We’ve worked super hard on our reputation, but not everyone always follows the rules. Medicare has rules that everyone must abide with and there are definitely people who go above and beyond what is ethical and that’s hard to battle against. I think something has to be done. It’s like the wild west here in Las Vegas.”

In order to stay ahead of their competition, the hospice has had to make sure they are providing services that others are not. While in the UK we are used to the reassurance that an ambulance will deliver us to hospital for free, here in the US, it again will cost the patient. CompassionCare Hospice decided to provide free transportation from hospital to a patient’s home, something that to many will ease the burden at a time when they have enough to worry about.

Listening to Julie and Jennifer describe the hospice and its workings made me realise that no matter where in the world you are, there will always be challenges you are faced with. While our circumstances may be different, St Luke’s, Nathan Adelson and CompassionCare all have one key thing in common, that our patients receive the care and dignity they deserve at the end of their lives. St Luke’s is incredibly fortunate to have the unyielding support of the local community, without which we would not still be here today and as Ashley put it quite simply, wherever in the world you are, thanks to the evolving world of hospice care, “If they need us, we’re there.”