"We were completely unprepared for the challenges and disruption that lay ahead" — A family share their experience of taking a loved one home for end of life care

Summary

In early 2022, following his wishes, my husband was discharged from hospital for end of life care at home to be provided by his family (his wife, three adult children and son-in-law) and nurses from our local hospice.

We were completely unprepared for the challenges and disruption that lay ahead for us all. 

Content

Challenges during discharge

The first challenge we encountered was receiving conflicting, confusing information from different staff members regarding my husband’s prognosis and future treatment and care. His consultant and their team were optimistic, speaking of further tests and a possible response to treatment in 3 weeks’ time. It was in that meeting, and on that basis, that we supported discharge and discussed arrangements.

But the senior specialist nurse caring for him was alarmed by what we had been told. Immediately after the meeting they took us aside to tell us that, in their view, my husband had only days left to live.

Although unsettled by this conflicting information, we preferred to believe in the more optimistic prognosis.

On that understanding, we began to make preparations. At this point we knew:

• My husband would be taken home by ambulance the next day.
• A hospital bed and other equipment would be delivered to our home the next morning.
• We would receive a supply of medication on leaving the hospital.
• Hospice nurses would visit us twice a day to assist, starting the next day.

Apart from needing a family member to wait at home in the morning to receive the bed, we thought we would be able to spend his last day in hospital quietly by his bedside.

What actually happened couldn’t have been more disorderly or more disturbing.

In practice, in addition to receiving the conflicting prognoses, this is what we experienced before discharge:

• My husband’s discharge was delayed by more than 48 hours, as hospital staff had great difficulty coordinating everything required for his move home.
• There were significant requirements we had not been told about, such as the need for an oxygen supply at home, which had to be located at a distance from a gas supply.
• The coordination difficulties meant that one of us waited alone at home for two full days, to receive the hospital bed and other equipment. This family member was therefore unable to be with my husband for an extended period at a critical time.
• On the second day of the delay, in direct contradiction of their advice the previous day, the ward sister advised us to take an immediate patient transport appointment even though it would mean going home before the hospital bed had arrived, and without any confirmation of when, or if, one would arrive. As the day went on, this nurse’s exhortations to leave without a bed in place at home were repeated and increasingly aggressive, and included the threat that there would, as a result, be no guarantee that hospice nurses could support us when we did eventually get home. We experienced this as bullying, coercive behaviour that greatly confused and disturbed us at a time when we most needed clarity, consistency and sensitivity.
• Delivery of the hospital bed was not straightforward. Access had not been checked beforehand, and when the bed arrived it was found that the layout of the house made it impossible to move it into a bedroom. With some difficulty, it was placed in the living room.
• The other equipment included an oxygen supply. This was not straightforward either. The bed had been placed near a gas fire. It had to be moved to a safe distance from the gas supply, which required taking furniture out of the room, difficult for the one family member at home handling this situation.
• Ward staff had contacted our local hospice on our behalf. We asked to have direct contact with the hospice ourselves so we could confirm arrangements. The ward sister (the one whose behaviour we had experienced as coercive) advised us not to contact them. We complied with this and so we left the hospital with no information about what the hospice nurses knew of my husband’s condition and no direct confirmation of their visits. This felt very insecure and contributed to our stress. We felt thrust into the unknown when we were at our most vulnerable by a system that didn’t want us.
• While we worked our way through all the problems, my husband’s condition was deteriorating, and he was suffering. He had a high temperature, great pain and nausea. But once the discharge decision was taken, nursing staff stopped taking his observations, stopped providing him with any medication to relieve symptoms and stopped washing him and providing meals. We had to insist that he be provided with some ongoing care and medication, and although he did receive the latter we had to overcome considerable resistance.

These problems compounded one another and created chaotic, confusing circumstances.

All family members at the hospital were spending their time running around, trying to get assistance and accurate information about what was happening and when from the various departments involved in the discharge of a patient in palliative care, all the while trying to be present for my husband and trying to ensure his comfort.

We’d been very wrong indeed to have thought that we could spend the period before discharge gathered round his bedside, gently reminiscing.

Challenges at home

Once home, we faced further difficulties:

• There was a great deal to learn: how to operate the hospital bed; how to store and use the oxygen supply safely; how and when to administer the medication supply; how to turn my husband, and deal with incontinence; and how and when to try to feed him or give fluids.
• We all (including the hospice nurses) struggled to understand the medication which had been provided. We’d received 15 different drugs. They were to be administered according to widely varying schedules and had different means of administration (subcutaneous, injection, oral rinse, sublingual, oral). The explanations provided were delivered rapidly while we were standing in a congested corridor inches from my husband who was being removed by the ambulance staff, when he needed me and was calling to me. We had no opportunity to confirm our understanding of the different medications or to check the contents of the bag before we left the hospital.
• At home, we found several errors to the medication supply. There was a supply of chemotherapy medication that wasn’t prescribed. There was no supply of other medication that was prescribed. Most critically, we hadn’t received any pain relief medication in a form that we could administer, as my husband’s condition had deteriorated significantly during the delay to his discharge and he became unable to swallow. As a result, just a few hours before he died, at the advice of the hospice nurses who were waiting to receive a syringe driver for intravenous morphine administration, I was compelled to drive from pharmacy to pharmacy searching for pain relief medication that we could administer. I deeply regret that time away from my husband’s bedside.
• The hospice nurses arrived at our home a few hours after we did. We spent a significant period of time briefing them on their first visit. They needed details of my husband’s medical history, condition, and medication. This also took time away from his bedside.
• We found there were errors to the information recorded in the discharge summary we’d received on his departure from hospital. One was to his condition, which was assessed and recorded as ‘moderately frail’ (it had been erroneously auto-populated with admission data and should have been ‘terminally ill’). This information bewildered and misled us (causing some family members to delay visiting him, believing he was fitter than he was, for example) and created difficulties for the hospice nurses. They had prepared to assist someone ‘moderately frail’ and it took them time to adjust and get the necessary equipment and pain relief. Consequently my husband didn’t receive intravenous morphine until one hour before he died.

As a result of these and many other issues, 34 hours after arriving home, my husband died having endured terrible pain and distress in chaotic and undignified conditions, which was devastating for his family to witness.

Learning from experience

If we had been aware of what we were undertaking, seeing how quickly my husband was deteriorating during the delay and understanding how little time we had left, we would have encouraged him to remain in hospital and explained to him why going home wasn’t a good idea. We wouldn’t have supported the decision to discharge him home.

The delayed discharge and the short time that remained to us meant that all the problems we experienced were concentrated, and much harder to deal with as a result. This detracted from the very precious few hours that we had left together. Even the period immediately after his death was affected. We’d had no time to find out what happens once someone has died, and were devastated to learn, at 1 am, that we needed to identify undertakers as a matter of some urgency.

Given the delay to my husband’s discharge and his deterioration, we should have asked for his suitability for discharge to be reassessed. As part of that reassessment, we should also have insisted on a review of his medication, particularly his pain relief medication. He left with a supply of medication that was based on an assessment of his condition made three days before his discharge.

But even when everything goes smoothly and there are none of the problems described above, taking someone home for end of life care is still a major undertaking. The following could be useful for anyone preparing to do that. 

Key things needed to help families prepare to take someone home for end of life care

1. A handbook, providing:

• A checklist of what should happen and in what order, once the decision to discharge a patient has been made.
• Contact information for all hospital departments involved in discharging a patient for end of life care at home, including an indication of who’s responsible for what.
• The advice to find, if possible, a more distant relative, a friend or a neighbour willing to be at your home to receive the hospital bed and other items on your behalf.
• Instructions for use of all of the equipment provided, e.g. the hospital bed and the safe storage and use of the oxygen supply.
• Instructions for how to care for a bed bound patient in palliative care, e.g. how to turn them, wash them, deal with incontinence, how to feed them and provide liquids, and the best position for them to be in to facilitate breathing and their general comfort.
• Contact information and details of available support in the community, including, for example, pharmacy opening hours.
• A checklist of what items are needed to make the patient as comfortable as possible once home.
• Instructions for what needs to be done in the hours following death.

2. Contact with the hospice before discharge

• A meeting or phone call in which the patient’s medical history, condition and medication is shared.
• Information about what to expect e.g. visit frequency, timing and length; what the nurses will do/not do; how to manage in between visits and what support is available then, especially at night or otherwise out of hours.
• The hospice contact details, including emergency numbers.

3. A private meeting, in the hours prior to discharge, between the primary caregiver and a nurse familiar with the patient’s care and condition, enabling:

• A discussion of the patient’s ongoing care.
• An explanation of the discharge summary (and checking accuracy).
• A review of, and instructions for, the medication supply, including which medication should be prioritised in the event that not all can be administered.
• Confirmation that pain relief medication is provided in a form that can be administered as a patient in palliative care is likely to become unable to swallow.

All of the above needs time. With time, the transition home is more likely to be successful. But if time is short, and particularly if problems arise, there can be concentrated chaos and confusion, likely to detract from the patient’s last hours and interfere with their care, as we found.

For these reasons, in our experience, it isn’t viable or advisable to take a patient home from hospital for end of life care when they are deteriorating and it seems likely that only hours or days remain.

If my husband had remained in hospital he would have received undisrupted care and medication (albeit in our case only with our insistence). All members of his family would have been able to be at his bedside throughout. He would have died in less pain, in more comfort and security, and with his dignity intact. And his family would have been much less traumatised by the experience.

We live with enduring shame and sorrow for his suffering. What makes it worse is that much of it could have been avoided.

Motivated by a desire to reduce the possibility of others suffering as we had done, in 2022 we submitted 20 complaints to the hospital concerned. Following a largely unsatisfactory response, we made a submission to the Parliamentary and Health Service Ombudsman.

Our efforts over 16 months to bring about improvement are documented here.

Related reading on the hub:

• HSIB: Variations in the delivery of palliative care services to adults
• Patients who experience harm provide stories, but who will really engage with their insights and opinions?
• Top picks: Eight resources about hospice and palliative care

About the Author

*To protect family members who remain traumatised by the events described here, the author of this blog wishes to remain anonymous; however, they are happy to be contacted if anyone has any questions. Please email info@pslhub.org in the first instance and we will pass your message on to the author.