Helping non-professional carers to better support dying people

Helix Centre
Jul 18 · 10 min read

The Helix Centre is an innovation lab working at the heart of healthcare. In a series of articles we’re sharing our recent findings, prototypes and headline conclusions from our latest end-of-life care work.

This second article reveals the policy and design work we have done to understand how to normalise and share responsibility of some important end-of-life care at home. Specifically, we were looking at anticipatory medications delivered by supporting laycarers.

De-professionalising end-of-life care

Hospices deliver the most specialised and experienced end-of-life care in the UK, caring for around 360,000 people each year. Yet due to the shifting dynamics of an ageing population, hospices acknowledge that their services are in need of radical change.

We know that death and dying can often cause a significant amount of fear and uncertainty to the dying person, their network of carers and family and even professionals. Through our research, we have uncovered a number of meaningful opportunities to improve quality of care by enhancing the abilities of those caring for the dying person, so that they can better support and accompany them through the experience.

“Allow people to lead people to take the lead, to let them do it by themselves. Create platforms. Make it easy for hospices to step back from controlling outcomes or processes.”

- Palliative care consultant

This direction also implicitly means re-distributing some of the power and control away from professionals and clinicians, to non-professionals. To do that, people need confidence-building and skills training from those experts, who should operate in supporting roles from the periphery, when dying is less complex. We feel this would benefit professionals directly too: it would enable them to reserve their time and skills for more complicated cases that call for specialist care.

Our research has revealed that many professionals understand that this re-focusing of power and responsibility needs to happen. We feel our role is to identify how these principles and ambitions can be tangibly defined in practice.

Not as radical as you might think

This redistribution and focus on community aligns with national ambitions. The National Palliative and End of Life Care Partnership describes two key objectives in their strategy for 2015–2020 that resonate with these strategies.

Maximising comfort and wellbeing
My care is regularly reviewed and every effort is made for me to have the support, care and treatment that might be needed to help me to be as comfortable and as free from distress as possible.

Each community is prepared to help
I live in a community where everybody recognises that we all have a role to play in supporting each other in times of crisis and loss. People are ready, willing and confident to have conversations about living and dying well and to support each other in emotional and practical ways.

This approach also features in the highly-regarded Gold Standards Framework, which seeks to provide high-quality care for people in the final months of life. One goal strives to ‘enable patients to live and die well in their preferred place of care’. This means keeping patients comfortable so they can remain at home.

However, when patients rely on stretched community services for timely symptom control, they are often forced, in crisis, to return to the hospital. This can result in people dying away from their preferred place, which is home, more often than not. At home, much of the focus of symptom control, and one of the biggest barriers to consistent high-quality care, is related to injections.

At the closing stages of a life-limiting or terminal disease (perhaps hours, days or weeks), people often lose the ability to either self-administer medications — such as morphine tablets — or they require regular administration of medications through a syringe pump or injection under the skin. Many of the medications used in palliative care have remained the same for decades: antiemetics (like cyclizine for nausea and sickness), analgesics (like morphine for pain), anticholinergics (like hyoscine for respiratory secretions that cause a rattling sound when breathing) and others. The move away from self-administration can be seen as a significant part of a person’s decline, where they become more reliant on others to manage their wellbeing and comfort.

To our initial surprise, through our research we discovered that policies for carers to administer subcutaneous injections at end of life do already exist in some areas of the UK. The question is therefore not: can this be done? But rather: “how might we design and deliver a scalable support service so that more people can access this?”

The impact of policy

Some policies were written for rural populations that are geographically spread, making it difficult for healthcare professionals to reach patients quickly at home. The authors of such policies also told us that they were sometimes responding to carers that happened to also be healthcare professionals — who were asking if they could administer subcutaneous meds to their relatives themselves, as they were already trained to do so.

We found these policies were rarely used or advertised to patients and carers. They were often kept ‘on the shelf’ for when policy is required to protect a service. Several palliative care specialists involved in writing the policies reported great anxiety from some GPs, pharmacists and other healthcare professionals to advocate for the practice.

However, this professional anxiety is seemingly not reflected in the general public. In a recent survey by Dying Matters, six out of ten people said that they would feel comfortable giving a pain relief injection to someone who was dying and wanted to stay at home.

Providing anticipatory or ‘just in case’ medications to help with symptom relief — such as morphine — may immediately be thought of as controversial and dangerous. However, it is worth considering that insulin — a drug that is fatal, like morphine, if given in the wrong quantity — is currently self-administered by diabetics up to three times a day at home. Anticipatory injectables are already left in the homes of dying patients for healthcare professionals to administer when needed. We believe there is a way to design a solution that protects against misuse but also supports lay people to be trained to administer these drugs safely.

On examination, we discovered that the existing policies consist of wordy explanations on how to give subcutaneous injections and accurately document the drugs that are given. They also include a considerable amount of legislation to protect healthcare professionals who might allow carers to use the policy.

We feel there are some fundamental issues with these policies. Firstly, they are almost all written for healthcare professionals, rather than lay people. With the average literacy age in the UK reported to be between 9 and 11 years old, it’s hard to imagine a majority being able to fully understand, appreciate and action its content.

With literacy being a potential barrier, our research led us to a study in India that looked at symptom-relief drugs being given in the home by primary caregivers. This proved that the use of colour coding in a symptom management kit could enable both illiterate and educated primary caregivers to successfully identify appropriate medications for certain symptoms. The study concluded that caregiver willingness to accept this training and responsibility was not dependent on gender, education, or social status. ‘Need’ rather than education or wealth was the determining factor, and the result was a clear reduction in the number of hospital visits.

These inclusive approaches provide an excellent foundation for us to consider a design response to the existing clinical policies in the UK.

Seeing where policies work elsewhere

There are deep-rooted issues around providing carers with the ability to administer medication. A study that looked at UK policies explored how bereaved family members recall managing end-of-life medications when delivering care to a patient dying at home in England. It concluded:

It is not surprising that it was perceived to be a demanding responsibility and at times for some, anxiety provoking, given that they reported little information or education to facilitate their role.

There is often simply not enough information or training provided to people of all abilities to handle the tasks that are either wanted or needed. But thankfully, this is not always the case.

A quality improvement initiative in Queensland, Australia provides an inspiring example to reflect upon: the model and educational package supports carers to safely manage subcutaneous injections for home-based palliative care patients.

The content provided includes illustrated step-by-step-guides on how to prepare and administer drugs, a supportive teaching video, colour coding medication labels, and a daily diary to document aspects of medication management. Nurses who teach this to carefully selected carers are also incentivised by receiving CPD (continued professional development) credit.

A randomised control trial of this model revealed that carers were satisfied that the package of information was relevant to them and the content provided necessary technical skills to manage subcutaneous medications. Importantly, they felt confident that they could safely pre-prepare and inject these drugs. In fact, their confidence levels were higher than a nurse or pharmacist.

In the randomised control trial, the intervention group changes in confidence from experience of first to subsequent injections.

The package was found to decrease their stress surrounding the administration of subcutaneous injections, resulting in satisfaction that they could assist with symptom management. Again, it can be done!

Rapidly uncovering opportunities

Taking onboard the global picture of training and education for professionals, carers and lay people around end-of-life medications, we have defined a hypothesis to test.

We believe there is scope for the dying person, with their carer, to maintain personal autonomy and to self-manage some clinical care needs, such as administering injectable symptom control medication, with peripheral support from professionals.

We organised a workshop to gather healthcare professionals from around the UK, some of whom had been involved in writing the existing policies for this area and others who were simply interested in developing this hypothesis further. This focused us on a number of areas for development. We identified themes that encapsulated the unique complexities of this work, and formulated question statements that framed these potential opportunities. The themes were as follows:

  • The importance of setting boundaries around decision-making
  • The importance of normalising patient activation
  • Education needs to be practical
  • Resolve auditing problems with healthcare professionals that stop evidence/demand being proven
  • Identify indication and situation drivers (such as rural communities, extreme weather) that generate demand for use
  • The need for different pathways within a policy for different types of patient
  • Management of medications needs to be easy and safe
  • Respond to professional anxiety around self-management of controlled medications

As a group, we evaluated each of these areas and the framed opportunities. Through a decision-making process we then selected the following two:

  • How might we provide practical education to carers?
  • How might we make managing drugs safe and easy?

Learning from lived experiences

These two opportunities are explicitly focused around education for carers and the existing or potential knowledge and skills of carers. So, to develop potential solutions we needed to learn about the experience of carers who had given sub-cut medications.

This was not an easy task. We encountered numerous barriers to access, which included low numbers and healthcare professionals’ reluctance to put us in contact for fear of upsetting them. We spoke to a 23-year-old woman who had used the policy whilst caring for her dying mother. As a trainee healthcare professional, she had asked her mother’s palliative care team if she could administer sub-cut injections herself after experiencing longer than acceptable waiting times for her mother to receive pain relief.

We asked her about her feelings around giving the ‘last injection’. Despite the anxieties of many healthcare professionals we spoke to, she said that even though no-one had prepared her for this eventuality, the knowledge that she could relieve her mother of pain immediately outweighed the potential emotional weight of giving her the last dose. Though anecdotal and a single case, we feel this likely reflects how others may approach the administration of medications.

Importantly, she also commented on the lack of educational material available to reference after initially being shown how to administer an injection. She described a stressful situation at 2 a.m, when tired and sleep-deprived, having to prepare the appropriate injection from a disorganised box of drugs and ‘kit’, with no material to ‘check against’. Her sentiment however was that she was pleased she was able to have cared for her mother in this way and had no regrets about choosing to do so. We recognise that we need to interview and learn from more people, and we continue to do so.

Where we go from here

In order to produce and trial a package that enables carers to safely and confidently administer anticipatory sub-cut injections, we must first gain the trust of the healthcare professionals who will be involved.

We are developing a bespoke partnership with NHS and hospice sector organisations to deliver this work. This is in line with our ambition to not simply design an intervention, but rather situate it within a wider set of changes that can really engage with the system. We want to buid in the scope for both changes in care, and in culture.

By working with different organisations and patient groups, we aim to design a product that is informed by the patients and carers themselves in conjunction with the palliative healthcare professionals who will be training carers how to use it.

If we are able to show how a model can be used successfully and confidently we believe that this could be rolled out to other areas, improving the experience for people to die well at home. We acknowledge that although this initiative will not be appropriate for everyone, it has the potential to benefit many different people across the country.

We want to gather the most representative and diverse testing population for our future prototypes and ideas: we welcome any thoughts and feedback on this as we develop the tools, so please get in touch using the contact details below and help contribute to our future work.

Contact the team

Ivor Williams, project lead
ivor@helixcentre.com
helixcentre.com

helixcentre

Helix Centre is an innovation lab working at the heart of healthcare. We translate research into products that improve health outcomes. We are part of Imperial College London and the Royal College of Art, and based in St Mary's Hospital, London.

Helix Centre

Written by

We are an innovation lab working at the heart of healthcare. We translate research into products that improve health outcomes. Based at St Mary’s Hospital.

helixcentre

Helix Centre is an innovation lab working at the heart of healthcare. We translate research into products that improve health outcomes. We are part of Imperial College London and the Royal College of Art, and based in St Mary's Hospital, London.

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