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Dying at home can mean more peace for patients, but it may not be for everyone

Author: Tom Moran
09 October 2015

A study published today in BMC Medicine has shown that those who die at home have a more peaceful experience than those who die in hospital, and have similar levels of pain.

The study also revealed that relatives of patients who die at home experience less grief than when the death occurs in hospital.

However, ensuring a good home death requires wide-ranging support, including a discussion of preferences, access to a comprehensive home care package and facilitation of family caregiving.

Today’s findings are based on the results of questionnaires completed by bereaved relatives of cancer patients in London. Of the 352 patients included in the study, 177 died in hospital and 175 died at home.

The research revealed that more than 91% of home deaths could be explained by four factors:

  • the patient's preference
  • relatives’ preference
  • receiving palliative care at home in the last three months of life
  • receiving district/community nursing in the last their months of life.

Other factors which were found could increase the chances of being able to a die at home included how long family members had been aware that the condition could not be cured, discussing a patient’s preference with family, and days taken off work by relatives in the three months before death.

Barbara Gomes from the Cicely Saunders Institute at King’s College London, the lead author of the study, said: "We know that many patients fear being at home, believing they place an awful burden on their family. However, we found that grief was actually less intense for relatives of people who died at home.

"Many people with cancer justifiably fear pain. So it is encouraging that we observed patients dying at home did not experience greater pain than those in hospitals where access to pain relieving drugs may be more plentiful. They were also reported to have experienced a more peaceful death than those dying in hospital."

Gomes hoped that the research would "prompt policymakers and clinicians to improve access to comprehensive home care packages including specialist palliative care services and 24/7 community nursing."

She added: "Many relatives see dedicated care as something they would naturally do for their loved one, but it still represents out-of-pocket money or days off their annual leave. Some governments, for example, in Canada, the Netherlands, Norway and Sweden, have set up social programmes or employment insurance benefits, similar to maternity leave, aimed at supporting families to provide care for their dying relatives.

"We urge consideration of similar schemes where they do not exist, with the necessary caution associated with complex public health interventions – careful development, piloting and testing, prior to implementation."

Jonathan Ellis, director of policy and advocacy at Hospice UK, welcomed the findings.

"Dying at home can be a source of comfort for both the person facing the end of their life and their families," he said, adding that it was "something that hospices have been helping to make a reality for many years."

He continued: "Hospices across the UK put people’s preferences and wishes at the very heart of their care, and help support families and carers. This allows people to die where they feel most at ease with the best support possible for everyone involved.

"With the majority of hospice care being delivered at home or through day services, hospices are uniquely placed to provide specialist and compassionate care to people and families facing the end of life in the UK – as well as having vital expertise to share with health and social care colleagues in a variety of settings.

"As the government considers its response to the review of choice at the end of life published in February 2015, this timely study provides further evidence of the crucial role played by services that help support dying people at home. We hope that it will result in a commitment by government to invest in the community services that help deliver better care and better outcomes for people approaching the end of life."

Death at home is not necessarily good

Earlier this week, an article written by Dr Kristian Pollock, principal research fellow at the University of Nottingham, challenged the "current orthodoxy" that most people would prefer to die at home, arguing that "focusing on place of death as the key indicator of quality in end of life care distracts attention from the experience of dying for patients and their families."

The article, which appeared in the British Medical Journal (BMJ), claimed that symptom control, especially pain, and being with loved ones are both more important considerations than where a person died.

"Death at home is not necessarily good, and just because a patient did not die at home does not necessarily mean their death occurred in the wrong place," Pollock writes. "It is important to recognise and accommodate the diversity of patient preferences for place of death, especially in the context of a cultural heterogeneity that is rarely researched or recognised."

She further warned that if home deaths were to become the norm that the medical profession strives for, it would become more difficult for patients to express alternative preferences.

"Normalising home as the best and natural place to die promotes a sense of guilt and failure if death occurs elsewhere," she concludes.

Macmillan Cancer Support’s chief executive, Lynda Thomas, said that choice at the end of life was crucial.

"Sadly we know that not everybody who wishes to die at home is able to do so because of a lack of support, meaning that people end up in hospital against their wishes. Similarly, for people who would prefer to die in hospitals, it is equally vital they also have access to the right care," she said.

Professor Julia Verne, end of life clinical lead at Public Health England, welcomed Pollock’s article.

"While evidence shows that home continues to be the preferred place of death for people in England, it's important to note that preferences can change over time," she told the Daily Telegraph.

"Around half of all deaths in England occur in hospital, so it's important that hospitals have resources in place to deliver high-quality care for patients in their final days of life."

The study published today in BMC Medicine is available on the BioMed Central website. Dr Kristina Pollock’s article is on the BMJ website.

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