Design and Dignity

I attended a public lecture in Dublin last night as part of the Hospice friendly Hospitals (HfH) programme. The subject matter was ‘Design and Dignity’ the case for renewing our hospitals. The Irish Hospice Foundation has launched a unique national programme to mainstream hospice principles in all areas of hospital practice relating to care for the dying and bereaved. The lecture while enlightening, succeeded in emphasising the major deficiencies that exist in Irish hospitals but it was good to hear that attitudes are changing.

Professor Roger Ulrich, Director of Centre for Health Systems and Design in Texas, delivered a long lecture outlining the evidence based design principles that should be incorporated into all future hospital developments. Steps such as improving visibility of patients, providing single bed rooms, reducing noise levels, and introducing nature and art to the hospital environment, have all been shown to reduce stress for the patient. This is all very laudable stuff but it seemed a million miles away from the reality of the Irish Health Service where patients consider themselves lucky to even get a hospital bed and where cross-infection is a major problem due to overcrowding. Janette Byrne, spokesperson for ‘Patients Together‘ took to the floor and told the audience that what Prof Ulrich was talking about was “just a dream for Irish patients.” Janette, who is herself recovering from cancer, stated “I live more in fear of the Health Service than I do of my cancer” and for me, that really said it all last night.

We have a long way to go to make our hospitals more user friendly in this country. Irish hospitals are a very long way off meeting the needs of patients, families and staff in relation to dying, death and bereavement. The HfH programme aims to change the culture of care in our hospitals so that people can die with dignity. This programme is not about blaming and shaming, it is a challenge to us all to ensure that a better service will be provided. The chairman of the night, Gabriel Byrne, challenged us all to “imagine” a future where our hospitals would provide dignity in dying, and to “have hope.”

7 Responses to Design and Dignity

  1. Baino says:

    “I live more in fear of the Health Service than I do of my cancer”

    My God that’s a powerful statement! Things must be dire indeed! I can’t complain about the palliative care here.Going through it with my Dad he pretty much stayed at home until the night he died with daily home nursing and quality palliative care but I agree, hospitals can be such cold and alien places for those going through the absolute pinnacle of stress. Surely it wouldn’t take much to make the environment more supportive, we manage to do it in Children’s wards, why not palliative wards?

  2. Grannymar says:

    I hope I have a heart attack! Not today mind you 😉

  3. Steph says:

    Evening! Baino and Morning! Grannymar

    Baino – Janette Byrne wrote an excellent book called: “If it Were Just Cancer: a Battle for Dignity and Life” outlining her struggle to survive the Irish health service. She’s a brave woman and a very good spokesperson on behalf of all patients.

    I’m sorry to hear about your Dad but it good to hear that he received quality palliative care. We have an excellent hospice service in this country with home care palliative treatment available but the fact is that the majority of people die in hospital and our hospitals were not designed with privacy and dignity in mind. That’s why a programme like Hospice friendly Hospitals is so badly needed to at least bring about change in the approach to end-of-life care.

    Grannymar – when you’ve had enough of chasing Toyboys, we’ll just take your batteries out! 😉

  4. Ian says:

    Single bed rooms and reduced noise levels should be so obvious as not to need stating – it is a measure of how far adrift we are that it needs to be made explicit. Sitting with someone who is dying with no more than a curtain for privacy is a familiar experience for too many people.

    I think full time staff would assist the situation as well – the agency nurses who do a few hours do not build up the quality of relationships that exist in the hospice.

    I think I would get cross if I started describing the complete lack of respect for a person’s dignity that I have seen in some places.

  5. Steph says:

    Thanks! Ian

    I have to admit that I felt thoroughly depressed listening to that lecture. I think it would have been a lot more beneficial to hear more about what the HfH programme is actually doing to improve the conditions for the dying in our hospitals. We need reality, not dreams.

    You may be wondering why an actor like Gabriel Byrne became involved in the HfH programme? Having watched a relative die in hospital with only a curtain for privacy, he felt incensed to do something to put an end to this lack of dignity.

    Enjoy your break!

  6. I also found it torture sitting at the conference and watching pictures of what Sweden, Australia and others already have as norm for ‘end of life care’. The dream was fantastic but like I said the reality for Irish patients and staff is so far removed. It was with respect to the chair and organiser that I bit my lip in relation to the idea that this could be a reality in Ireland anytime soon or that the will is even there in Government to make this a reality.

    We still have cancer patients and others waiting at home for operations, tests, and chemo. No bed still means no bed. The stress for these patients is unbelievable and my heart breaks for them. Even Susie Long after all she went through suffered badly at the end, until she got a bed in Harold’s X hospice. Of course this had its down side because it meant she was away from her home town, her wonderful family and friends when she needed them most.

    As a point of interest I had sent an email round letting all my contacts know about the conference. Here is a response from a caring and supportive consultant.

    Janette I looked briefly through the document but it made me upset.
    The best, most up to date accommodation in our hospital was the ward for the elderly, which is also used for palliative care or hospice care of older patients.

    It was closed a week ago.

    We do not have enough nurses to run all the hospital wards so something had to go.

    The HSE won’t let us recruit nurses.

    I’m sick and tired of the mixed message, double think, speaking out of both sides of the mouth that the HSE pours out at the public and at hospital staff.

    They tell us they want “Hospice Friendly Hospitals”.

    Then they tell us patients who need Hospice care are inappropriately in acute hospital beds, as such patients do not need acute hospital care.

    Then they close down the wards in hospitals that do most hospice type care.

    So now I know which HSE message I believe.

    It’s all a fairy tale. END

    (I have to say I agree)

    Janette

  7. Steph says:

    Janette – great to hear from you! And welcome to my blog.

    I sat in disbelief throughout that lecture. Having got so many interested parties together with the welfare of Irish patients at heart, I couldn’t believe that the HfH didn’t make better use of the event to turn it into a force for change. I know I wasn’t alone in feeling this frustration.

    As Gabriel Byrne was quoted in yesterday’s Sunday Indo “what is wrong with demanding a system that takes care of people who are ill, not just as a privilege but as an absolute, fundamental human right? The power of people speaking up to say what they want in relation to the health system – I don’t see what’s unimaginable about that.”

    People need to realise that nothing will change unless enough people get together to make their voice heard, and to influence political decisions.

    Janette – here’s some links below to other posts I’ve written which may be of interest to you.

    https://biopsy.wordpress.com/2008/03/30/a-force-for-change/

    https://biopsy.wordpress.com/2008/04/09/be-angry/

    Thanks for visiting and please feel free to keep in touch.

    Regards, Steph

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