Module 3: Best Interests

3.5 The Best Interests gap

In this unit we draw on our research to identify some of the gaps in Best Interests decision-making about feeding tubes. We’ll then introduce you to two families in particular to explore their experiences and you’ll be invited to complete a series of reflective exercises to try to identify the different problems in the care pathway for these patients.

A reminder of our research

We’ve interviewed over 100 people with a relative in a vegetative or minimally conscious state and often followed patients and families over time: from acute care, through specialist rehabilitation centres and into long term care settings.  We’ve also participated in formal Best Interests meetings (including chairing them). You can see some of our academic publications about this work under the “Resources” unit at the end of this course.

We’ve interviewed people who believed their relative would have wanted life-sustaining treatment continued and people who believed their relative would have wanted it stopped. Sometimes these were the same people, but they changed their views over time as their relative’s prognosis became clearer.

Our focus is always on what the patient’s views might have been and whether families were given the opportunity to explore and convey what they knew about this (as opposed, for example, to just being asked what they wanted to happen). We also examine whether families felt confident in the care being offered to their relative and whether they have been given:

  • clear and updated prognostic information (e.g. about the likely spectrum of recovery);
  • support to understand their own role in decision-making (e.g. that  ‘next-of-kin’ are not responsible for any decision made);
  • insights into the options, including the option of discontinuing Clinically Assisted Nutrition and Hydration (CANH) and the palliative plan that would be followed if so.

Our research identifies many gaps in all these areas.

Introducing two patients

We’re going to use what happened to two patients, Chris and Cathy to illustrate how some of the gaps in Best Interests decision-making play out in practice. You will hear from Chris’ parents and from Cathy’s sister – family members who contributed to our research and have kindly agreed to share their experiences here.

The only unusual thing about Chris and Cathy is quite how long both were sustained in PVS. Chris was in an industrial accident in the 1990s; Cathy was in a car crash in the 1980s, but it was only in 2019 that formal best interests reviews have considered whether or not CANH was in their best interests – in both cases concluding that it was not.

These individuals exist in the context of historical (and sometimes ongoing) problems around assessment, care and decision-making for these patients and a tendency to continue providing CANH by default. 

We’ve chosen to focus on Chris and Cathy because long term PDoC patients like them are sometimes left out of the improvements in practice that have occurred in recent years. They may not have access to the clinical or ethical/legal skill sets concentrated in some specialist centres. Even when these families do encounter specialists such staff may be reluctant to prompt Best Interests discussions about feeding tubes. In fact after delivering training we’ve often been told, in effect, ‘Yes, I can follow the guidelines and processes for new patients coming into the system, but it is going to be much harder to raising this sort of Best Interests discussion with the families of the longer term patients’.

In some cases ongoing CANH will be in keeping with what the patient would have chosen for themselves; in other cases it will not be. What ever the conclusion it is important to have Best Interests reviews.

Why do you think healthcare professionals say that they find it hard to follow recent guidelines for good practice when considering the care of long term PDoC patients?

Make some notes and then put these to one side – we’ll come back to this at the end of the unit. 

Meet Chris’ parents

Chris’ parents emphasise that they are very grateful for all the money, time, care and attention given to their son; however, they did not feel supported to contribute to decisions about what was right for him in relation to CANH. We’ve written an academic article about what happened which you can read here, but a summary is presented below with the opportunity to listen to Chris’ parents.

Chris suffered an anoxic brain injury in an industrial accident when he was in his 20s. Like most families at first they were just focused on his survival: “We lived in the hospital… praying please God, please, please God, let him breathe, let him be okay”. After Chris was stable he was moved to a specialist rehabilitation centre and then discharged into ‘the community’ (to live with family). His mother says she thought bringing Chris home might be a gateway to recovery.

“I remember the doctor saying that when he comes home there’ll be stimulation, cooking smells, the vacuum cleaner going, …that this could stimulate Chris perhaps to becoming aware.”

They were also encouraged by the ‘stimulation kit’ they were provided with, including blocks of wood (to bang on either side of Chris’ head to see if he responded to sound), sandpaper to rub on his skin, and bottles of smells to stimulate his senses. They saw copies of reports for the insurance company which stated that Chris was in PVS but they just put the paperwork away in the back of a cupboard; they did not want to acknowledge his condition.

However, by the time they contacted us for help they had been certain for many years that their son would not have wanted to be kept alive in his current state – what ever that was (and at first they were unsure whether he might have some awareness)

In the 5 minute clip below you can listen to them in conversation with Jenny. This conversations happened after an up-to-date reassessment had been done on their son at a specialist centre. Here they reflect on the many missed opportunities to consider what might be best for Chris. (The names of clinicians and centres have been edited out).

As you listen to this clip make some notes about what you hear. In particular consider what might have made a different to Chris’ parents and to the Best Interests decisions about Chris over the years.

Later in our conversations, Chris’ parents expressed regret about how long their son has been sustained in his condition. His mother said: “All we’re doing is looking after Chris’ body. We’ve just accepted it over the years. But now I feel we’ve not done enough. We’ve just cared for him, not thought about what we should do for him.”  His father added: “I worry that we have been negligent”, but he also drew attention to the responsibility of clinicians to raise CANH-withdrawal.

“Nothing was said [about the possibility of stopping treatment]. They probably thought we were in denial and we probably were. But doctors have these seminars – they have research papers come through – shouldn’t they have known? Shouldn’t they have said something? Why didn’t anyone say anything?”

Now move on to learn about another long term PVS patient, Cathy, and hear from her sister, Marie.

Meet Cathy’s sister

At the point at which Marie contacted us for help she was trying to get her sister’s clinical team to arrange a Best Interests meeting to review whether or not CANH was in Cathy’s best interests. Jenny accompanied her to that meeting. Listen to the following short clips where Marie talks about what she sees as gaps in Best Interests decision-making for her sister up until this point. Marie’s mother died about a year earlier, her father died several years before that. Both her parents devoted their lives to caring for Cathy, visiting her in the care home and bringing her home every weekend. Marie feels Cathy’s clinical team almost tried to blame her parents for decisions about her sister.

As you listen make notes about what might have made a different to Marie or her parents, and to the Best Interests decisions about Cathy over the years.

​Based on what you have just heard ask yourself:  What might have made a different to Best Interests decisions about Cathy over the 30+ years she survived in PVS?

Note down some ideas about

  • how individual health care professionals might have been able to help
  • how systems of care might be improved
  • when, according to Cathy’s sister, might there have been opportunities to raise questions about CANH.

Continue to add to your notes as you listen to the next few clips, and also note what impact this whole process has had on Cathy’s family.

Marie has a clear message for doctors, for families and for her sister, Cathy

 Marie reflects on what might have helped her father, who was adamant that her sister was aware. She also talked about what would have helped (after her father’s death) the rest of the family to be open to a different approach to Cathy’s care. She described a time when her sister was very ill with an infection and was sent back from the hospital with the expectation that she would die. The feeding tube was removed. However, Cathy started to recover from the infection and it was Marie herself who then asked for the feeding tube to be reinstated. She wonders now if that was the right thing to do but says she had not been involved in any advance care planning about this possibility and did not think a proper palliative care plan was in place (and besides, she knew that, at the time, a court order would have been needed). 

Speaking to Jenny again, six months after her sister’s death (following feeding tube withdrawal), Marie underlines the importance of regular best interests meetings and review.

We are very grateful to these family members for sharing their perspectives with us and agreeing for video clips to be used. We hope listening to what they have to say will help healthcare professionals protect other patients (and their families) from what happened to Chris and to Cathy.

Reflecting on staff concerns, creating change for the future

Earlier we asked you to note down some ideas in your Reflective Journal about why staff are sometimes reluctant to review CANH with the families of long term PDoC patients

Click on the cards below to find the sort of thing staff have sometimes said.

Do you recognise or identify with any of these statements?

Are any of them valid reasons not to have a Best Interests review?

  1. It’s been going on so long the family must think that keeping him alive is what he’d have wanted.

2. The best interests discussions must have taken place already.

3. Several years ago she had life-threatening infection, but her brother insisted on treatment, so we know what the family think. 

4.  There’s no one around to ask what he might have wanted. His wife doesn’t visit anymore. She’s remarried.

5. Her mother has devoted her whole life to caring for her daughter; how can we suggest now that this was futile?

6. The staff are very attached to him – he’s a mascot really, showing what good care can do. He’s not has a single bed sore. It would be a slap in the face to staff to suggest withdrawing treatment.

7. If we raise this question now, but didn’t before, doesn’t it expose problems with our previous practice?

8. We’re just not in contact with the patients we discharged over 10 years ago, we have no idea where they are.

9. The accident was 28 years ago, she was only 26 when it happened. So, she’s lived longer like this than she ever lived as a conscious human being. So this is her life; this is who she is. It would be wrong to ask what she used to think over quarter of a century ago.

You may understand and even identify with some of these statements – but are any of these valid reasons NOT to have a best interests review?

Make some notes in your reflective journal in relation to each statement –  then click below look at our answers.

Our answer

  • No, none of these are valid reasons not to have a best interest review. They do not allow you to opt out of national clinical guideline:

Using any of these ‘reasons’ to avoid or delay best interests reviews would be in breach of the guidelines.

Some additional problems with these statements are: 

  • Assumptions: Some make assumptions what information might be provided about what the patient would have wanted – without giving those who knew the patient an opportunity to be updated and asked formally about this in regular reviews (Statement 1 to 3)
  • Failure to consult: Even if family/friends no longer visit it is important to consult them (we’ve interviewed some who can no longer visit precisely because, for example, they were so clear that the person would have hated their current situation and who can provide very useful information to inform a best interests decision). If the patient has no one ‘appropriate to consult’ an IMCA should be appointed and they may be able to find information about what the person had been like (4)
  • Other people’s interests, not the patients: Some are not person-centred on the patient – instead they focus on staff or family or reflect concerns about the organisation rather than the patient. (no 5 to 7). This is only a valid factor to put into the best interests balance sheet if the patient themselves would have done so.
  • Gaps in outreach: The eighth statement (no 8) highlights a common service provision issue and highlights the need for outreach
  • Values – which may not be the patient’s own: The final statement (no 9) is a value statement which some people find acceptable and some people do not. It may or may not reflect how the patient themselves would have approached this issue. A best interests decision must be informed by seeking out the patient’s own values wishes, beliefs and feelings (and this can include how the patient themselves would have thought about the ‘old self’/‘new self’ idea.)
Post a comment below

Review your journal entries and reflections based on listening to Chris’s parents and Cathy’s sister. Now please post a comment below sharing:

  • a reaction to what you have heard from the two families who contributed to this unit
  • any ideas you have for improving support for families and Best Interests decision-making for patients (including if you can think of specific patients in your own service).