Families on ICU

Dear all,

This months’s questions have been inspired by  the ‘Mastering Intensive Care’ podcast series, they focus on aspects of the non-technical skills in providing care for patients and their families…

(1) Should family or NOK be present for the daily ICU ward round?

(2) Is it time to put an end to restricted visiting times on the ICU?

 

This month’s paper  explores these issues further: Meeting the needs of intensive care unit patient families

https://www.atsjournals.org/doi/full/10.1164/ajrccm.163.1.2005117#readcube-epdf


A – I’ll start the ball rolling with no and no.

The ward round is confidential to the patient and family presence would impinge on frank discussions (HIV testing, alcohol and drug use and ceilings of care to name just a few).
The visiting period impacts on the delivery of care, distracts staff, impairs rest for the specific patient and the ones around them and makes private inter professional discussions even harder to achieve in our (typically) open plan ICU’s.
It’s all very “right on” but an absolutely dreadful idea.
I’ll stop beating about the bush shortly.
B – I support A on both counts.
In fact the patient and family both say that they like the rest period, and that having visiting times gives them permission to leave. This is direct feedback I receive in follow up clinic.
Also this paper is almost 20 years old.
C – I also agree entirely with this.

I think that open visiting is bad for all involved.
From my personal experience, open visiting makes you feel like you have to be there all the time. And if you aren’t, then you’re a bad relative who doesn’t care enough!
Visiting hours as B says, gives ‘permission’ to leave and visit for short periods only.
I think we totally underestimate how exhausting it is for families and what an awfully long day a day in icu is. Being ‘allowed’ and feeling permitted to leave in my view can only be a good thing.
I actually think we would be better to shorten visiting rather than consider extending it.
D –  I have sympathy with A‘s view. However, I think there are some occasions where family presence is acceptable, particularly on evening rounds. I see the biggest issue as confidentiality not just for the patient but for other patients in adjoining bed spaces. I would have less of a problem with families being present if we had a unit made up predominantly of side rooms.
E –  I have to agree that no and no are the best answers, in my opinion.Should relatives/NOK be present during ward round?

No, for two reasons.  Firstly, confidentiality can’t be maintained.  Secondly, would we discuss matters in language that the relatives can understand, in which case we may miss important stuff to the detriment of the patient, or do we discuss things using our ‘normal’ language, in which case the relative will not understand the discussion, or worse, will misunderstand it.

Visiting hours:  C‘s point about giving relatives permission to not be there is super-important, I reckon.

F – So the topic of family involvement in daily ward rounds seems to have been quite topical recently with a fair number of people choosing to adopt this in their practice. I appreciate the argument against this in terms of confidentiality but in units with not many side rooms are any of our current medical discussions around the bedside confidential, esp. as not all of our patients are sedated. I appreciate that allowing family at the bedside during the ward round would require a significant change in how we would deliver/manage communication at the bedside, but I think that there are some potential benefits that are worth considering:

1. Family can often give quite useful information for timely diagnostic and decision-making purposes

2. Family presence during the ward round may create an atmosphere of transparency and a greater appreciation or understanding for the care provided

2. Communicating with family at the bedside may  help to reduce inconsistencies in information that they receive over the course of the ICU stay which is often identified as a concern

3. Communicating with family at the bedside may also help to encourage more regular updates, and reduce the time required for lengthy family meetings

4. Relaxing visiting hours may fit in better with family members who may have other work and personal commitments

5. Family may also feel like they can visit for shorter periods more frequently which may be less exhausting than feeling they are obliged to stay for the entire visiting period.

I have worked on units before where there have been no restricted visiting hours and It didn’t seem to be a problem for nursing or medical staff. Family members are usually very understanding if they are asked to leave for patient interventions or care, and seemed appreciative of the flexibility around visiting their family members.

I ‘m not sure I know which way I would lean on this concept but I think it may be worth a try to see how it works in practice.

G – I agree with restricted visiting as a default, and that open visiting is a bad idea for most relatives and staff. We do have families who regard it as important to be able to spend more time with relatives than is allowed by visiting times, and we usually make a plan for them to spend more time with their relative if they request it. In this case we usually will place them in a side room. It is useful to be flexible, particularly with relatives of dying patients.

H – As an aside, I am not convinced that having relatives on the ward rounds is a good thing. There are issues of confidentiality but my own experience is that it also prevents clinicians from discussing the patient openly and throwing ideas and theories around. That said, I think we need to be better in ensuring relatives are updated on a regular basis. At the World Congress in 2016 an American group presented their work on relative feedback, using iPads as a bedside tool. It allowed the family to submit data on a daily basis about a number of issues (privacy, dignity, communication, nursing care etc.). The other main thing they focused on was ensuring that the agreed goals stipulated at admission were revisited on a very regular basis as they were finding that agreed limitations on care often were ignored as days went by, leaving families wondering where it was all going. As far as family presence on the unit, I remain paternalistic on this and feel that quiet times are valuable to both patient and relatives. I think many of our patients are over-stimulated and many relatives are left exhausted and then find it harder to engage in difficult decision making. However, I know that this is not a view shared by all staff and am pretty relaxed about whatever policy we have at that time.

 

I – My personal feelings echo A’s. Adding family members present at the bedside during the ward round adds a significant challenge to both the clinical care of their relative and their experience of ICU.

Many would choose to leave the bed space anyway to allow the patient to be examined. As well as important clinical discussions as mentioned already the family situation including the bedside nurse or doctors interpretation of their understanding/acceptance of patient trajectory is sometimes a key part of the ward round determining the ongoing management plan.

Another significant issue for me is one of understanding. It is important that we can have professional discussions during the ward round. Even if then clarified for the benefit of relatives at the bedside it has the potential for them to misunderstand or if there are differing opinions within the team to doubt the overall approach to the patient. I note that, in the study linked, conflicting information given to relatives was associated with a worse perceived experience and as the ward round team come from a variety of specialities and levels of experience (medics, nurses, pharmacist, physios etc) then there will inevitably be some differences of opinion.

The one possible benefit is of collateral history- particularly for those patients in the first 24 hours of ICU admission for whom the circumstances are unclear about both usual physiological condition and health immediately preceding admission. However adding a further source of data to an already information intensive time period also poses a risk.

Of interest we had a relative specifically request to be there during intubation of her husband in Jimmy’s a couple of weeks ago. Would other people allow relatives to stay for procedures – lines, intubation etc?

What do other people do about transfers from the ED to ICU on admission? I never allow relatives to come with me because 1) I don’t want them to struggle to keep up and 2) if there is an incident I want to be able to focus solely on the patient.

How do people feel about getting families to witness CPR? There are papers certainly from ED authors about getting families in, especially if they are preparing to stop

J – I agree with everything so far.

I would say the caveat being patients newly admitted and lines of communication not yet formally opened with their relatives, those still in the stabilisation/resuscitation phase and those patients who are dying should be the exception to restricted visiting but with an expectation to be transitioned to as the situation changes.

Personally I would not have a problem if relatives wanted to stay for ward round but would certainly ask myself and them why they want to be present.

I agree would likely lead to mis-interpretation and potentially breakdown of trust unless carefully managed.

For me the backbone of all this is communication and trust gained from families.

In response to I‘s specific comments regarding procedures/transfers/active resuscitation.

My personal experience comes from both time served in ED and of course in this current job.

We have a cohort of older paediatric patients at the LGI who occasionally end upon on the adult ICU for things like red cell exchange, plasmapheresis & CVVHD etc etc which can’t be facilitated on the PICU or pads ward where they are based. I have on occasion allowed the parents to stay in the room or bed space when placing central venous/dialysis lines etc after a specific request from them or the patient.

I have never found this to be a problem and am comfortable with the concept however will insist there is another member of staff who is experienced to support them as well as someone else to assist me and the patient. Clearly we had an open discussion about the procedure, what each others expectations were and if asked to leave must do so.

In regards to witnessed ‘resuscitation’ and in this sense I refer to ongoing CPR. It is probably a good thing, and not just for paediatric patients, particularly if the patient is likely to die and I feel we should actively offer the opportunity for families to be present with their relatives.

However, their is an absolute requirement for a experienced team member to be disengaged from hands on care and solely focussed on the family and on occasions this may require more than one staff member. Seniority and experience is key, they must have the confidence in their team, not have role creep i.e. ‘just popping off to run the blood gas etc’ and have a deep understanding of what decisions are being made and why being then able to relay that back to the family clearly and simply during the resuscitation.

If we cannot meet those requirements we shouldn’t offer it in my opinion.

I think over the longer term the fear of the unknown and the uncertainty in how a relative died in a flurry of resuscitation has a much more negative impact, provided the right relatives are selected, guided and supported through the acute event properly.

I have over my time in ED supported many parents, family members and friends through the resuscitation of their relatives etc in the resus room through routine cardiac arrest, resuscitation, major procedures, even two emergency thoracotomy’s one of which on a child. We used to have a sudden bereavement ED follow up clinic at the LGI and the overwhelming feedback was how little uncertainty there has been afterwards for them, they were grateful of the opportunity to be present and had much less ‘what if’s’.

My understanding of the literature when I last looked at this was witnessed resuscitation (on a spectrum of interventions) was associated with reduced time to coping, bereavement time, acceptance, less medico legal actions and is almost certainly generally harmless provided the above prerequisites are met.

So providing we have families trust, communicate with them well, they voluntarily want to be present and have dedicated experienced staff to support them what have we got to hide?

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