Dignity by design

Design & Dignity is a collaborative project between the Irish Hospice Foundation and the HSE to improve care  for patients at end-of-life.  Cliona Hughes talks to the people behind the programme and examines the difference it has made to end-of-life care in hospitals

Since the mid-1980s, there has been a surge in hospice and palliative services available throughout the country, much of which is in the form of at-home care. It was noted in a 2007 study, undertaken by the Irish Hospice Foundation (IHF), that acute general hospitals were the main source of referral for terminally ill patients to hospice and palliative care. At the time of the study, only eight of the State’s general acute hospitals had approved a full palliative care team and bereavement support was generally uneven throughout the hospital system. Certain mortuaries were in disrepair. The study highlighted the gaps and problems in the provision of funding for certain services and facilities. Actions were taken to improve the situation so that medics, patients and their families would benefit from tranquil facilities directed towards their specific needs.

There was a need for a project that put an emphasis on end-of-life care in acute hospitals, which led to the development of Design & Dignity. This is a partnership project between the IHF and HSE Estates. Its focus is on improving facilities in order to provide a more compassionate experience for anyone facing dying, death or bereavement and to make this a priority in healthcare. This is done through design excellence with evidence-based healthcare planning. The project was officially launched in 2010 as part of the Hospice Friendly Hospitals (HFH) programme and has since funded over 40 projects throughout Ireland. The project aims to provide quiet and peaceful places for family members and friends to avail of when someone close to them is dying through new family rooms and bereavement suites.

The impact of the project was highlighted in a report launched at the end of March this year at the Royal Institute of the Architects of Ireland. The research was carried out by a team from the School of Nursing and Midwifery in University College Cork (UCC) and commissioned through the All-Ireland Institute of Hospice and Palliative Care (AIIHPC). This report was the first review of the impact of the joint IHF and HSE Estates programme. The report illustrated the positive impact that the programme made on patients, families and hospital staff’s experience with regards to death and dying in the hospital setting. It is the result of an independent review of the impact of 18 Design & Dignity spaces, created through the first two rounds of the grants scheme funded between 2010 and 2014.

Benefits

Researchers conducted focus group analysis with healthcare and support staff, interviews with bereaved relatives and collated data from real-time comment cards to provide the evidential basis of the report. The aim of this report was to assess the impact of the design on patients, their families and the hospital staff and to determine the key factors contributing to the successful completion and maintenance of the project. The report noted the vast improvements Design & Dignity has made to death and bereavement care in Ireland since the 2007 report, which highlighted the lack of funding provided and disregard shown towards mortuaries, spaces for private conversations and facilities for bereaved families. The project recently announced its fourth round of the grants scheme. Hospitals such as Midlands Regional Hospital Portlaoise were awarded a grant to further develop end-of-life and bereavement care with these recommendations considered.

Mr John Browner is Assistant National Director of HSE Estates and works closely with the IHF as a part of the Design & Dignity programme.

“The best way to put it is that mortuaries were back-of-house services, hidden away, and I suppose, from an Estates perspective, we would be looking at what requires investment and prioritising that,” Mr Browner told the Medical Independent (MI). “The focus was always on theatres and ED [emergency department] wards, etc. We would have put in new mortuaries in major redevelopments but there was much more of a focus on that from IHF. [Former Health] Minister Mary Harney was approached by [a] former manager of the IHF.”

Mr Browner said that agreement was reached to put a small amount of funding in place to refurbish and upgrade existing facilities.

“It was as limited as that. I was managing the capital programme and got a call from the Minister and was told that the Department, from the lottery funding, were going to put in €250,000 and they wanted the HSE to match that and to start a programme. It went from being something imposed on you to then embracing a challenge, you could say. We had a lot of discussions, we had to talk about mortuaries, but we broadened it out to end-of-life care and infrastructure improvements in that area. That goes from family rooms on wards to family areas in emergency rooms and intensive care where the most traumatic instances happen, and people die. Over 40 per cent of people die in acute hospitals. It’s become a wider programme now rather than just focusing on mortuaries.”

Ms Mary Lovegrove is the manager of the Design & Dignity project. She works alongside HSE Estates to transform end-of-life care in acute hospitals.

Speaking to MI about the origins of the programme, she said: “The physical infrastructure was looked at, and we commissioned Tribal Consulting and they looked at all of the physical environment with that concept in mind, and the mortuaries came out as being in a really poor state and in disrepair in some circumstances. Other things, like lack of spaces for private conversations, you hear of news being broken on stairwells [and] corridors and families left grieving in these places”.

Design & Dignity funds a range of projects through a formal grants scheme, including waiting areas and maternity units. Ms Lovegrove said the impact of thoughtful planning and design in the healthcare setting can foster wellbeing: “We want to promote good end-of-life care. You cannot cure every patient, but you can ensure people have a good death and that is not a failing, it is a gift. Outside of the solace room in [St Luke’s Hospital] Kilkenny, there is a family room for families to gather after a baby has died and outside, there is an image of bluebells. It’s the height of the wall and you know you’re approaching somewhere special.

“The staff went and printed that on a postcard for women in the outpatient department or if they have a scan that they were worried about or there is a risk, so when they come in with the card, the person at the desk will see it and fast-track them through, so they won’t see all the new-born babies. They are taken away and are looked after with special treatment. It is a knock-on effect. That is design. There is a sticker that goes on the woman’s chart for pregnancy loss so in the future, when they come back, the doctors know before they see her and can show compassion.”

The project provides practical architectural support and advice through their style guidelines. These have been endorsed by HSE Estates for all new building and refurbishment projects. The UCC report found that the Design & Dignity programme spaces have provided an oasis of calm for families at difficult times in their lives by allowing them to remain in close proximity to their loved ones, within the hospital setting. The study found that the projects were described as being symbolic of compassion and demonstrated that the organisation valued the experience of those who had been bereaved and grieving. They also noted that by providing these types of spaces, hospitals sent out a clear message to their staff and patients that end-of-life care is important. It was stated that the facilities provided staff with a dignified and private environment in which they could engage in caring and compassionate interactions with family members. The report concluded that these facilities impact on the culture of care within hospitals and are an important aspect of acute care.

Ms Lovegrove said the project has been praised by doctors and nurses: “Particularly in St James’s Hospital; it’s one of the busiest emergency rooms. They had a small, pokey viewing room and they were really keen to have a family room with an adjoining viewing room. This is so that doctors can talk with the family and when they are ready, they can view their loved one who has just died. They are protected, not in the middle of the emergency room, but protected, and they are hugely grateful and the feedback has been just amazing. I think people feel that most people die at home or in the hospice but actually most people … die in a hospital … We are trying to promote the hospice concept in the hospital environment. Some of the big teaching hospitals have 1,000 deaths a year.”

Future-proofing

The UCC report made a variety of recommendations (see box, below-left). One of its main recommendations was to make all future Design & Dignity builds future-proofed by having them Wi-Fi ready and implementing charging stations with video-conferencing facilities.

“The main way that we are future-proofing everything is that we’ve come up with design guides for end-of-life care so that anything, such as a ward, that we build in the future will have a family room built into it. Historically, there isn’t a family room in the ward and the same in emergency rooms. So, anything being designed or built now includes these things. On mortuaries, we are now looking at the public side — the viewing, removals and meet-and-greet areas, not on the other sides, where the post-mortems are carried out. So, that’s the way I see it,” Mr Browner stated.

Ms Lovegrove emphasised the importance of the Design & Dignity guidelines: “We have a style book with case studies where we critique projects and have specific guidelines for whatever project is being undertaken, whether that be a bereavement suite or family room, it literally spells it out for you and what you need to be doing. What is really important about future-proofing or safeguarding this project is that there is staff ownership. The room could look nice initially when it’s all new and lovely but if there’s no staff ownership, things won’t be replaced, there won’t be fresh milk in the fridge, so it has to be built into the existing infrastructure and environment. For instance, in Mayo [University Hospital], the staff gave up their staff room for a family room, but they still needed a staff room. This became the old linen cupboard but then the linen needed to be brought somewhere else, so instead of delivering it once a day, the porters had to deliver it three times a day. It was all stitched in together like a domino effect and everyone had to get on board with things. If people can see the benefits, then they can take ownership and take care of the room. A lot of that groundwork has to be done.

“In relation to Wi-Fi and future proofing, we had talked before about Skype facilities, but most people have smartphones themselves and it was mentioned as well in the UCC report, but it hasn’t really come up as a huge issue”.

Medical professionals

Both Mr Browner and Ms Lovegrove acknowledged that the Design & Dignity project was developed, in part, with medical professionals in mind. Ms Lovegrove stressed that the new facilities help doctors with one of the most difficult aspects of their job — breaking bad news.

“Doctors have an awful job of having to break news and they are mortified if they have to break this news on a corridor. They start off already on the back-foot, having to apologise. They say to us it has made an enormous difference and also given them a great sense of pride to be able to say, ‘while there is no treatment or cure we can give your relative, you are welcome to stay here for as long as you like and make yourself at home. We have this beautiful newly-designed facility for you to use. We are here when you need us.’ It actually provides a facility for the doctors if they want a quiet word with the family.” Ms Lovegrove even suggested that new and larger family areas could be created if existing office space, including larger offices used by doctors, was given over to the programme.

“It isn’t fair for doctors to break bad news on a corridor and I think they shouldn’t stand for that. Talk to hospital management if you are experiencing something like that, or a consultant. It’s not fair on them, families or patients. They should advocate,” she said.

It has been noted in research conducted by RG Hughes in 2008 that attention to architectural design of hospital facilities along with the improved design of medical technology can enhance patient wellbeing and safety. An unpleasant physical environment in hospitals can detract from the dignity afforded to both patients and their families in their limited time together when in long-term hospital care. New physical changes implemented into hospital settings through projects like Design & Dignity can make the adaptation into a life of hospice care less daunting for families. ADF Price of Loughborough University noted in his 2006 study of innovative design and construction solutions for improved therapeutic healing environments, alongside Yang, that healthcare facilities need to be designed to be innovative and healing environments on both a physical and emotional level. “Often, a lack of natural light is a big one,” Ms Lovegrove said, noting that the physical design of healthcare facilities can be a huge factor in quick and effective recovery.

CEO of the IHF Ms Sharon Foley believes the Design & Dignity project is of immense value. “The other day, we were talking about the structure of the partnership as being as being a very effective one at a corporate level and it has enabled some very positive developments in some very tricky areas in a hospital to happen in a very efficient and planned way,” Ms Foley told MI.

“It is an example of a very strong partnership between the HSE and a charity, but we have worked at it … for nearly nine years. The value of having it external to both organisations, to a certain extent, means there is a quality standard applied to Design & Dignity projects and that the project isn’t subject to the winds of change that happen at a political level or that happen in the HSE. I think it is protected. We have been advocating in the programme in the next phase to have a national mortuaries redevelopment programme. We think Design & Dignity would be a very positive channel to do something like that because you can get a very high standard of quality and it also gives the space for these projects to begin and come into maturation at a planning stage.”

Funding

Mr Browner stated the project seeks to make these standards an accepted norm rather than a luxury in hospitals in the future. However, he admitted that resources are required for this to occur.

“We have limited funding. We can only refurb existing buildings or perhaps build an extension and we don’t go into the background of mortuaries such as Waterford; that’s nothing to do with us. Our plans are that these standards are accepted everywhere, understood and implemented. Everything we build now is single-bed and en-suite and these new wards will have family rooms and discrete spaces where people can sit. We have won the battle on the mortuaries and they take up a huge amount of the funding,” he explained.

Ms Lovegrove said that 11 mortuaries have been completed but there could be at least 20 more left and that it is a culture-change programme that needs 20-to-30 years. Regarding the remaining mortuaries, Ms Foley said: “The mortuary renovation programme is a particular focus and we have been identifying facilities from as early as 2007. That will become a bigger focus of our advocacy work. We would love to see a five-year programme in place, these are massive renovations and they are expensive”.

Design & Dignity’s long-term focus is to allow all public acute hospitals to benefit from one of their grants, to refurbish all mortuaries to meet their guidelines, and for all future healthcare building projects to implement the suite of their guidelines.

“Our focus is solely on improving end-of-life care for anyone facing dying, death and bereavement. That is our long vision and we are there for the long-haul. My advice to the health system would be to advance more of those partnerships, because they can give real value in the long run,” Ms Foley concluded.

Recommendations from the UCC report

As well as evaluating the state of and the impact that the Design & Dignity has had in the first two rounds of the grant scheme, the UCC report made recommendations for future Design & Dignity builds. This had been informed by site visits, focus groups, evidence-based literature and relatives’ feedback. These include:

• That a family room will be on every ward in acute care.

• That there should be a national agenda to support the Design & Dignity programme.

• That routine cleaning schedule in rooms be implemented.

• That rooms must always be fully stocked with refreshments.

• That rooms be future-proofed by making them Wi-Fi ready with charging and video conferencing facilities.

• That family rooms and bereavement suites be part of new builds.

• That money should be spent on durable furniture with a non-clinical feel.

• That furniture for all ages be introduced.

• That an architect with healthcare experience and who understands the space be engaged early.

• That a continuation of the Design & Dignity grants scheme should be implemented.

• That further roll-out of the programme into other clinical settings should be introduced.

• That the IHF fosters ongoing leadership in evidence-based design.

• That a corporate agenda in end-of-life care is ensured.

•  That fundraising for sustainability is supported and managed.