Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

Theme 1A: provision of information

Respondents perceived practical benefits from the information provided by MND Associations. The information was valued in a number of domains, with respondents benefitting from specific and timely education regarding MND (‘Caregiver training extremely helpful with emphasis on information and skills acquired before they were required’) and training courses relevant to the caregiving role (‘Very practical information on how to assist my wife’). Reading materials were also reported to be of practical use (‘We appreciated most of all the information brochures available including recipes as swallowing became an issue’).

Respondents also perceived benefits associated with the provision of information for health professionals (‘I valued the way in which our MND support person supported us both & was an essential information resource for our health practitioners’). A further practical benefit was the readily available informational support provided by the MND Associations (‘Always being available & willing to answer questions & deal with problems as they arose’). This information was disseminated in several formats, with caregivers appreciating the facilitation of access to information, education, reading material and information sessions.

Theme 2A: equipment advice and provision

A strong theme was the practical benefit derived from equipment provision and support from the MND Associations. Respondents noted benefits for both themselves and their care recipients (‘Meeting our needs with equipment which made my life easier and made my partner able to be as comfortable as possible’), particularly when equipment needs were addressed promptly (‘The provision of equipment was extremely well handled, waiting times were minimal’; ‘Responded to my call for home adjustments, ramps, bed etc. promptly’) and assisted caregivers in their role (‘Timely provision of hospital bed took an enormous load off me having to organise one’). Respondents noted that the MND Associations provided them with essential equipment that they would not otherwise be able to afford, as well as guidance regarding the equipment.

Theme 3A: advocacy and linking to services

Respondents noted benefits from the advocacy provided by the MND Associations as well as the linking and coordination of relevant services. Respondents appreciated MND Association involvement in promoting timely services (‘advocacy to get PEG quickly when needed’; ‘MND Association did help fast track [patient name] appointment that led to diagnosis’; ‘Advising Nursing Home, getting help with speech therapy and bringing Palliative Care on board’) and assisting with the application for services (‘Assistance with ACAT and respite options’; ‘NDIS application’). The provision of linkages to relevant services (‘provided advice to us of different organisations that may be of assistance to us’) as well as assistance with the coordination of these services were perceived as beneficial by respondents (‘sleep apnoea testing, provision of PEG feeds’; ‘helped make appointments’; ‘Assisted with contacts, OT assessments, and links to MND clinic’).

Theme 4A: showing empathy and understanding

Respondents benefitted from competent demonstrations of emotional support by MND Advisors. In particular, listening and empathy were valued (‘MND representative was emotionally supportive as she was empathetic to our situation’), and interactions with staff could lift spirits (“[Advisor Name] was kind, warm, cheeky, knew what to say. Would bring a smile to Dad’s face”). This support was perceived as helpful in terms of emotional preparation (‘Emotionally educated us in expectations and provided great empathy’). Caregivers appreciated ‘very compassionate’ staff who exhibited ‘empathy and understanding’. Respondents noted benefit from interactions with skilled staff (having a personal counsellor from MND association’ who demonstrated a ‘unique ability to put people at ease).

Theme 5A: personal contact

Respondents commonly noted benefit from personalised contact from MND Associations. This contact could be in the form of phone calls, visits and personal letters (‘The follow up phone call and visit after mum passed was lovely’; ‘many phone conversations which all provided us with the support we needed at the time’; ‘The visits were wonderful. So caring and supportive and only a phone call away too’; ‘MND Assoc was very kind to send condolence letter’).

Theme 6A: peer social support

Caregivers support group meetings and interactions were perceived to be beneficial (‘Group lunch for the bereaved was a big help’); particularly if conducted by a trained facilitator (‘I think peer groups can be effective if led by the “right” expert’). The opportunity to interact with peers in a similar position was also considered valuable (‘Contact with other caregivers and persons with MND who were going through the same thing’).

Theme 1B: lack of continuity in case management and contact

Some respondents experienced a lack of continuity in their case management from MND Associations, leading to some dissatisfaction with the service. In some cases, support from the MND Association ceased (‘Initially we had a wonderful advisor. However, when he left, we did not receive any further support’), while other respondents were unimpressed with staff replacements (‘Our MND advisor visited monthly & then left her position. We did not meet her replacement but did have one phone call’).

Some respondents stated that they did not have sufficient contact. This lack of contact was characterised as insufficient phone or home visits (‘So really I had no real contact with MND association’; ‘None, like they forget you were there, a bit disappointed’; MND advisor visited once – no other contact!; “felt neglected”). A lack of perceived contact was also evident post-bereavement (‘My contact person left and was not replaced in time to make contact after my husband’s death’).

Theme 2B: perceived lack of staff competence or training

There was a perception that some MND Association staff lacked competence and training. A lack of knowledge from staff was concerning (‘Often we knew more than our MND advisor’) and led to a low perception of benefit from MND Association services (‘Very little – a brand new person who knew almost nothing about MND, and almost nothing about supporting us’). Staff consistency in experience was also noted (‘New nurse had no real experience in MND. Physiotherapist same, first OT had no MND experience’), while other respondents questioned the value of the advice they received (‘I felt that having private conversations with other caregivers was more beneficial than some of the “professional” advice’).

Respondents perceived a lack of MND Advisors’ competence and training in particular areas such as emotional support (‘The people from MND association alarmed me, whereas the [community organisation] nurses were very reassuring’), meeting facilitation (‘The MND rep had no idea how to conduct a meeting’), disease-specific advice (‘The MND representative didn’t really understand Mum’s MND type so wasn’t able to be practical or proactive’).

Theme 3B: lack of emotional support

Some caregivers indicated that emotional support was not always present. They stated that they did not receive any emotional support at all (‘I don’t think I gained any real emotional support’), while others commented on a perceived lack of staff competence or training in this domain (‘Our MND advisor and original OT were very helpful. All the time, but some of the others I don’t think really understood the real pressures felt at home living with the dreaded disease’; ‘a very pleasant, young man called on us at home again. But he went too far in explaining prognosis. We were aware of MND progress as we had a cousin with the condition. But the MND representative was determined to complete his spiel even though I tried to step in as it was causing us both distress’). Consequently, some respondents reported that emotional support was dependent on the competence of the individual staff member (‘It depended on the person assigned. Some good, others not overly concerned’).

Theme 4B: lack of access to MND services (rural/regional)

Respondents in rural and regional areas noted the lack of services and contact available in their area (“it was just a shame that we lived so far away from [capital city] that when she did come round, she only had 15-20 minutes. She did a fantastic job, and I hope that more coordinators can attend rural communities more”; didn’t even see or hear from a regional adviser’; ‘we do not live in capital city so MND Association contact was minimal’) leading some in nonmetropolitan areas feeling neglected (‘I believe weren’t interested in the people in regional areas’; ‘In a regional area it is impossible for a caregiver to access the programmes offered by the MND Association which do not offer programmes more than 100 km away’; ‘Nobody visited us at home. We live in a rural area’).

Theme 1C: more personal contact and involvement from MND Association

A desire for more contact from the MND Association during the EOL period was reported. Respondents frequently noted a lack of contact during the palliative phase (‘Once palliative care were involved there was little or no support from MND Asoc’). Caregivers would have preferred more MND Association involvement and support during EOL (‘More checking in with the family to see how they are coping’; ‘A phone call, visit; basically a check-in to see how things were going. We didn’t see the advisor for 6 months before my husband died’; ‘The MND Assoc. seems incapable of intervening or ensuring the care is consistent and appropriate’). Minimal contact during the EOL phase was also perceived by respondents as lacking compassion (‘We virtually had none and when we saw someone was a rushed visit. No care factor’).

Theme 2C: euthanasia option

A strong theme was the request to have euthanasia as an option. Respondents emphasised their desire to see the law changed to allow the choice to end life via voluntary euthanasia or voluntary assisted dying (VAD) (‘Legal and social acceptance of voluntary euthanasia’). The rationale behind this request was evident in comments regarding the reduction of suffering (‘The end took too long – and seemed very distressing and terrifying to patient’; ‘It is distressing watching your mother die slowly. She wanted to die sooner but could not’) as well as dying with dignity (‘Allowing a person to die with dignity – VAD needs to be introduced’). Respondents perceived a lobbying for change role for MND Associations in this area (‘end of life was being managed with help from GP and palliative care. What MND Association could do would be to lobby for legal euthanasia’).

Theme 3C: better preparation for EOL

Many respondents felt unprepared for the EOL process and death. They expressed a need for education and guidance about what they can expect in the final stages of MND (‘Let the caregiver know what to expect. I didn’t understand what was happening I think they just expected me to know what was happening’; ‘Offering some form of awareness to those interested of what the final stages may be to help with end of life care’; ‘Explain what likely to happen as I feel I was unprepared for how and when my husband would pass away’). Respondents noted the negative emotional consequences associated with being unprepared for EOL (‘A main issue was a failure/unwillingness by the MND Clinic to inform me of how the “end might come”. This created a sense of fear in self and patient’; ‘Maybe be told the things that will happen in more detail so you’re not shocked when your loved one dies quicker than you thought’).

Theme 4C: health professionals needing to show more compassion and be trained appropriately

Areas of improvement were related to respondents’ experiences of a lack of compassion from health professionals during EOL. Respondents noted barriers through distressing experiences; with doctors (‘The palliative care doctor in charge would not set up the morphine pump, as had been discussed to relieve severe episodes of breathing distress’; ‘GP’s attitude towards prescription of pain medication, palliative care unit had to intervene’) and with nurses (‘MND palliative care nurse not helpful at all. An MND trained nurse to visit and support, we had one visit once in two weeks and only stayed for two minutes – shows no care or compassion’; ‘To have the staff in nursing home more educated on this illness, otherwise they show lack of care/kindness’). Caregivers reported a lack of training in rural and regional areas (‘Being regional there wasn’t much available. Nurses didn’t know how to care for an MND patient’).

Theme 1D: more contact and compassion from MND Associations postdeath

A strong theme was respondents’ dissatisfaction with contact and compassion from MND Associations postdeath (‘Immediately after the death of my husband, I received a call that the MND Association was going to pick up the apparatus used– lack of compassion as it was 4 days post death’; ‘If they had kept in touch with myself after my husband had died – even if only for a short while’). A lack of bereavement support for caregivers was evaluated negatively (‘Bereavement support could have been useful . . . At end of life, it might have been useful to have someone ring to ask if it’s all OK’; ‘Once partner dies, a better follow-up than a typed letter’; ‘The final face to face session with the carer, it felt like, when my brother died, that their role had ended. It becomes more business’). Some respondents noted a sense of abandonment by the MND Associations postdeath (‘You should make contact with person after losing someone. I have not experienced this after my partner gone, like nothing happens, no one around you have to deal on your own’; ‘More care/visit for the person left behind’).

Theme 2D: MND Association providing referrals and links for counseling

Improvement of bereavement support included a request to be connected to counseling services. While some respondents reported a general need for counseling (‘Counselling. My life has changed, I no longer feel like I belong to general society’), others requested professional counseling (‘Psychologist/Counsellor with experience of MND. Weren’t able to access counselling from MND Assoc. – only from [another organisation]’; ‘Professional support’; ‘the caller - obviously a very caring person but I didn’t need someone who seemed as upset as I was. Skilled support is necessary’) and support groups (‘Contact and recommendations on support groups’). Numerous respondents reported wanting to be referred to, or linked with, counseling (‘MND Assoc. needs resources to assist more in this stage – such as referral to Psychologist, Counsellor etc’.; ‘I wonder if the MND Assoc. would recommend counsellors. I really did not know where to start looking’).

Theme 3D: access to caregiver support groups and peer interaction

Respondents requested and valued support from other MND caregivers. Where such support was absent, or had ceased, respondents noted their disappointment (‘The support group I attended for 5 1/2 years ceases to exist for the caregiver once the patient dies’; ‘During the illness it was difficult to attend support groups but after his passing I would have loved to meet up with past caregivers’; ‘I would like a previous caregiver of an MND patient visit the recently bereaved’). Where peer support was present, respondents noted the benefits of this support (‘A meeting for caregivers after death was excellent’; ‘I’m aware that for my father, the MND caregiver’s group were his main source of support as there were others who had been bereaved also’).

Theme 4D: provision of a genuine continuum of care rather than postdeath abandonment

Respondents perceived a need for a continuum of care that extends beyond the patient’s death. They expressed dissatisfaction with an abrupt end of support during bereavement (‘Some contact would have been appreciated;’ ‘I did not understand why [patient] left suddenly and we did not say “goodbye”’; ‘Basically once he had passed, heard nothing from them’), while others requested that care should continue beyond death (‘Follow up communication (phone call) in the months following bereavement would have been appreciated, especially prior to first Christmas’).

Respondents commented not only on the lack of contact via phone or visits (‘A few more visits to check how you are handling things and supply information about available help if needed. It is not easy in this situation to make a phone call and admit you need help’) but also on the quality of the contacts. Minimal, non-personal or non-compassionate contact from the MND Association postdeath was considered tokenism rather than genuine support (‘Receiving more than a card and referral to donate clothes and one home visit would have been appreciated’; ‘I received the follow up call and it was OK but felt superficial’). Respondents were also aware of the limited resources available to MND Associations and added their voices to the push for increased funding and resources (‘Follow up support. Want more contact, would have been helpful for those with no other support systems. I do understand the association is limited though’; ‘More funding for more staff in the community organisations’).

Theme 5D: guidance regarding postdeath practicalities

Guidance in the form of lists and information covering practicalities postdeath were suggested improvements, to assist caregivers to prepare and deal with bereavement (‘Perhaps a practical list of how to organise funeral, finances etc. (or a list) might help someone without knowledge in the past, to follow’; ‘Checklist booklet for things to consider and contacts’; ‘and timeline for things to be finalised. The days fly by when grieving and support on what needs to be taken care of would be very beneficial’).

Theme 6D: more access to postbereavement support in rural and regional areas

Lack of postbereavement MND services for people in rural and regional areas was of concern. Respondents emphasised the lack of support in these areas (‘More support after he passed away. There was ‘nowhere in [my] area to access support or none that I know of’; ‘programmes not accessible for regional dwellers’) and called for greater equity of access (‘People living in more remote areas should have the chance others get to support people. The MND Association needs to address this problem’).