Providing palliative care for heart failure patients at home

Background:

In 2016, the Heart Failure Supportive Care Service was established in Cardiff and Vale to improve the experience of patients with advanced heart failure in their last year of life. The service works with patients to build rapport, provide symptom control, improve understanding and acceptance of the limits of prognosis and progress advance care planning to support choices at the end of life including place of death.

This model of care consists of early referral and an initial overlap between specialities, followed by a gradual transition to a more palliative approach with time.

Most patients with advanced conditions prefer to avoid a prolonged experience of dying and choose to die at home, wishing to avoid recurrent and lengthy hospital admissions in the last year of life. 81% of all patients would choose to die at home but approximately the same percentage of advanced heart failure patients die in hospital.

Aims:

This Bevan Exemplar project aimed to introduce the use of subcutaneous Furosemide infusions in caring for patients in their homes. This is an effective means of managing episodes of fluid overload in a palliative way in patient homes, instead of the usual practice of hospital admission for intravenous Furosemide infusion.

Increasingly frequent episodes of fluid overload occur in the last period of these patients’ lives and by treating them in this way, the episode that ultimately becomes a patient’s last episode can be managed at home. This maximises their time in their preferred place of care and consequently, their preferred place of death can be achieved more often.

Challenges:

There were many barriers over the course of the project: some were attitudinal and some practical. One important way in which the team overcame these challenges was by maintaining a totally resolute belief that its model of care was the absolutely right thing for patients.

From a practical point of view, the need for the district nurses to administer infusions, for community palliative care nurses to oversee and for GPs to assess patients before commencing the infusions were key challenges because they were asking professionals to add to their usual workloads.

However, generally, this was overcome by communicating personally with those involved to ensure that all professionals fully understood the important patient-focused aims of the project. They also provided a detailed, individually tailored patient treatment plan, guidance notes and telephone access to the supportive care consultant for clinical support and the heart failure consultant by email for cardiology advice.

The most difficult attitudinal barriers came from a variety of professionals and consisted of a great deal of negativity and a persistent flow of new barriers. The team responded to this by sharing patient stories and feedback as well as explaining the existing evidence base from which they were working. This was coupled with collaboration with colleagues throughout the trust and the palliative care community to build support and share practice.

Once the team had positive outcomes to share, they then advertised them by seizing all opportunities to present the project, especially to key people in the Health Board and at national meetings which raised awareness, support and recognition.

The Bevan Commission was also very helpful in raising the profile of the project, for moral support and in providing an official stamp of approval.

Outcomes:

This project has been extremely successful and 12 patients were managed at home with subcutaneous Furosemide over the past 12 months. This amounted to 16 treatment episodes: 10 from which patients recovered and 6 for end-of-life care.

Key outcomes included:

• Time spent in preferred place of care increased by between 20-100%.

• Average patient satisfaction was 8/10 and unsolicited positive feedback was received from 71% of bereaved carers.

• 1 out of 7 patients changed their preferred place of death to the hospice and so overall, 100% of patients managed with subcutaneous Furosemide died in their preferred place of death.

• The Heart Failure Supportive Care Service facilitated 16 admissions to the hospice for advanced heart failure patients over 12 months: totaling 32 hospital admissions avoided, which was equivalent to avoiding 488 inpatient bed days.

Next steps:

This project has now secured funding from the End-of-Life board for the next 12 months for dedicated Consultant and CNS clinical sessions.

The Health Board has also agreed to assist with a sustainability plan so that the service can be funded going forward on a more permanent basis. This will enable further embedding and refining of the current service model, and the expansion of this to a greater referral base within Cardiff and Vale University Health Board, including patients under the care of General Medicine teams.

The team will then be able to increase the number of advance heart failure patients being treated with subcutaneous Furosemide at home, and support more of these patients to stay at home for longer and die at home when this is patient preference.

There is support from the Lead for the End-of-Life Board and there has been interest from those delivering care to Advanced Heart Failure patients from other Health Boards in Wales to share experiences, service design, supporting pathway and guidance. The team will also be involved in reviewing the All Wales guidelines for Heart Failure and Cardiac referrals to Palliative Care.

The Health Board asked to meet with the team to understand how they facilitated this transformation in care and the potential for adapting this model to other diseases and specialities, including: adult congenital heart disease, stroke, respiratory and renal.