Even amidst life -and sunshine - there is death

Jeremy Porteus blog 2020
Jeremy Porteus
Chief Executive, Housing Learning Improvement Network

Jeremy Porteus, founder and director of the Housing LIN (Learning and Improvement Network) highlights the role of the specialist housing sector in meeting people's preferences at the end of life.

It seems logical really. With surveys consistently showing that most people would prefer to die at home, the specialist housing sector clearly has a key role to play in end of life care.

That is becoming more true with each passing year as more people die at an older age and with more complex needs.

Earlier this month the Department of Health published its response1 to the 2015 Review of Choice in End of Life Care2, a document that I had the privilege to be involved in as a ember of its review panel.

It is encouraging that the response to our work took the form of a series of commitments - effectively a pledge to ensure that the excellent care some individuals and their families receive in the last month, days and hours of life is replicated across England.

Both the review and the response acknowledged the progress that has been made since the publication of the national end of life care strategy in 2008.

The specialist housing sector, not least, I'm proud to say -the Housing LIN - has played its part in delivering improvement over recent years.

The sector has recognised how care and support workers and managers in specialist housing can initiate and hold the conversations with residents nearing the end of life that are key to understanding and meeting people's preferences.

The Choice review emphasised that high quality and personalised care based on people's choices and preferences are inseparable. That means having those conversations.

During the winter, the Housing LIN, supported by Public Health England, produced a briefing3 underlining that point. Housing support staff, the document notes, can identify people approaching the end of life, discuss their end of life care wishes, advocate for them and involve other agencies and service when appropriate.

Scheme managers can work to support people who wish to die at home. By working with local hospices they can respect the wishes of people who wish to be cared for at home for as long as possible. Hospices and hospice at home teams can provide specialist clinical care to people living in such schemes so they can die at home -or move to a hospice for their final days.

Last year, the Housing LIN updated previous work with partners in a practice briefing4 for managers of housing with care schemes It highlighted the need for training support staff, the role of telecare and telehealth and the importance of housing design and adaptations to people's homes in promoting a 'good death' and avoiding crisis hospital admissions during the last hours or days of life.

The design issue is very much something the specialist housing sector, particularly the Housing LIN, is well placed to lead on. The three HAPPI reports5 published by the All Party Parliamentary Group on Housing our Ageing Population since 2009 have driven improved and inclusive design in older people's housing.

The first two reports in particular have highlighted how the design and feel of specialist housing can help people to retain their independence for longer and create a sense of wellbeing. Both those factors are crucial to helping people to die at home if that is their choice.

The hospice sector too is learning the importance of quality design and of the role of the built and natural environment in helping those it serves to achieve a good death.

Recognising that the sectors can learn from each other, the Housing LIN's website6 now hosts excellent case studies of well-designed hospices that are light years away from the clinical hospital institutions where many people spent their last days in the not-too-distant past.

The best of the new generation hospices offer single bedrooms that are carefully and subtlety linked to communal areas such as lounges and sitting rooms, so people can choose privacy or interaction when they wish.

While taking account of clinical needs such as infection control, many such hospices steer clear of the while laminates and tiles which characterise most clinical settings -opting instead, wherever possible, natural materials that create supportive, calming and uplifting environments.

By using as much natural lights as possible and building around central gardens or courtyards, the hospice architects help create a supply of clean air and light that improves patient wellbeing.

Sustainable architects, Architype, explain in their Housing LIN case study7 how their redevelopment of St Michael's Hospice in Herefordshire "struck a balance between a professional healthcare environment and a high-end domestic space that supports people affected by life-limiting conditions to live in a comfortable, healthy environment".

Facilities such as physiotherapy suites help patients regain strength; while they can practice daily activities in assessment kitchens and bathrooms. Each cluster of bedrooms is oriented to maximise daylight and each room has its own outdoor terrace.

With the summer's first heat wave upon us and many of us are embarking on our holidays, it may seem bleak to think of people sitting on those terraces enjoying that sunshine for perhaps the last time.

However, that they can do so, is a reminder of how far we have come and that we should be striving to ensure that the housing sector plays its part in ensuring we all eventually have 'a good death'.

This blog first appeared as an online opinion piece in E-Hospice news Friday, 22 July 2016.

1. Choice in end of life care: government response. Our commitment to you for end of life care. Department of Health. 2016 (opens new window)

2. What's important to me. A review of choice in end of life care. February 2015. The Choice in End of Life Care Programme Board. 2015
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3. Housing LIN Practice Briefing. End of Life Care: Helping people to be cared for and die at home. Alison Giles. 2016
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4. Housing LIN Practice Briefing. End of Life Care: Information for housing & care providers. Housing LIN, 2015

5. Housing our Ageing Population Panel for Innovation (HAPPI) (opens new window)


7. Housing LIN case study 109. A fresh approach to palliative care - sustainable design. Jessica Taylor, Architype Architects (opens new window)


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