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End-of-Life Support: The Role of Pharma
How should we prepare for the final moments of our beloved ailing friends or relatives? How can pharmaceutical companies help? These are perhaps questions that not everyone is comfortable hearing; nonetheless, they must be asked before another and more pressing question arises - do we resuscitate?
Irish broadcaster, Matt Cooper, had the difficult experience of being confronted with the do-not-resuscitate (DNR) dilemma twice. First was for his 83-year-old father, who was suffering from emphysema, and second was for his 76-year-old mother, who had suffered multiple strokes. The two incidents were six years apart and, in both cases, Cooper gave his consent, knowing that should resuscitation be successful, his parents would have no discernable quality of life. Upon recalling the end-of-life (EOL) state of his father, Cooper said, “He had fallen away to just over six stone in weight, suffered from a multitude of ailments brought on by his deteriorating condition and was begging for pain relief.”
The pharmaceutical industry plays a significant role in providing support, not only for ailing patients, but also for the family members who are caring for them. A 2012 publication by The National Council for Palliative Care (NCPC), about support for carers, identified the unique issues faced by people caring for EOL patients, including difficulty coping with the patient’s demanding physical, emotional, social and spiritual needs, coordinating care on a 24/7 basis, having conversations about resuscitation, stopping treatment, planning funeral wishes, and dealing with feelings of loss, grief and bereavement.
Stephen Head, GP and Clinical Director, County Health Partnerships, Nottinghamshire Healthcare Trust, spoke at the 2014 Patient Summit about how the patient’s trust in healthcare professionals and processes has deteriorated in the past few decades and how quality of EOL care from the perspective of both the patient and the carer can be rebuilt through confidence and a sense of control. We spoke to him to find out more about the patient’s journey and how pharma can help improve EOL care.
The patient’s journey today
The kind of care quality that Head refers to covers how the entire experience feels for the patient, including whether their journey is comfortable or tiring and confusing. A few decades ago, GPs, community nurses, and hospitals were just a bus ride away, making the patient’s journey easy, familiar and more comfortable than today. There were “no strangers in those days,” says Head.
In the 21st century, the patient journey is, most often, quite different. Although sub-specialization of services have led to better health outcomes, they have also resulted in the patient being carried back and forth between multiple and often unfamiliar facilities. The patient is bombarded with sensitive information throughout the day, and carers share in the difficulty of transferring from one unfamiliar town to another. This leaves everyone tired, confused and in no fit state to make decisions about an incurable condition. This lack of control over the situation is highly stressful in the face of death.
According to Head, pharma can provide solutions to improve quality of EOL care by providing systems of support that make the patient and their carers feel confident and in control. He provides three key recommendations:
1. Involve patients and carers by supporting their independence and decision-making through home treatments and shared care plans
Patient and family can choose a plan of care that they fully understand to make them better prepared for EOL issues. Head points out that most terminally ill patients don’t die at home, even if they would prefer to. One of the best solutions to improve quality, therefore, is delivering care and treatment at home. Patients and carers can be equipped with the best information, provided through educational materials, and supported by communication with physicians to make timely decisions in the most appropriate way. “Educational resources for patients and carers have great potential…mainly around decision support tools and patient/carer information,” says Head.
To prevent patients from feeling a loss of control, pharma can help them carry out certain self-management tasks that they are capable of doing for themselves, such as administering pain and symptom medication. Head suggests that hospitals can identify specific forms of medication and give the patient the liberty to research and learn about them from home. This would be greatly aided by an easy-to-understand information sheet supplied by the pharmaceutical company for the education of patients and their carers. This gives patients and carers a first step into gaining confidence and control over their treatment.
“We need families and friends to be able to manage the treatment - as they do normally throughout people's lives and also at the end,” says Head. There is also the current service provision where Health Care Personnel respond to a medication distress call but take two hours before arriving at the patient’s home to administer the drug. Head finds this slow response to crisis an issue that needs to be addressed as a matter of priority. He adds, “That is why I am keen on things like auto-injectors and other non-oral admin routes so carers can continue to provide treatment themselves - just as they did when the patient was taking oral meds”. If pharma can make the medication and dosage easy to determine and administer by the carer, this would improve the patient’s quality of life.
2. Provide patients with effective near home care and minimize dependence on Health Care Personnel (HCPs) by using IT and telehealth to improve decision-making and care monitoring
To improve the quality of EOL care, patient journeys can be coordinated and accomplished as close to home as possible through a one-stop clinic. When HCPs take two hours to respond to a home distress call, there are instances where the carer becomes impatient and dials 999 or any other emergency hotline. Most often, the patient spends their final moments lying on a stretcher in a rushing ambulance or a busy emergency room. A quicker response time is needed to improve EOL support. In instances where the carer would be capable of providing vital care, an instructional video or live online support would reduce the strain on the system and possibly even extend the patient’s life. These are resources the pharma industry can help develop.
In 2014, National Voices produced a narrative, entitled 'Every Moment Counts'', for NHS England that focused on person-centered coordinated care near the end of life. It was gathered from the different perspectives of people who needed EOL care, and their carers and families. The document identified success factors that improved outcomes for EOL patients, and one of these factors was “responsive and timely support.”
Minimizing dependency on HCPs is possible through support from community members in the form of quicker response. According to a 2014 publication, entitled ‘Actions for End of Life Care: 2014-16,’ which set out NHS England’s commitment to EOL care, “Living with a progressive, life-limiting illness, dying, death and bereavement involves not only the individual, their families, carers and those close to them, but also the communities within which they live.”
Head also stresses the significance of teleresponse as a major technological asset that can support carers. Telephone and Skype make consultation and care monitoring possible without the need for the GP to travel to wherever the patient is. Head cites the example of dosing medication, which is a common dilemma for risk-averse carers and GPs. To guide carers and monitor their dosage, Head recommends the use of radio-controlled dosing.
Telehealth can be an educational resource for carers to facilitate improved decision-making as well. It is of great help when carers are informed and aware about the transition from cure/remission, to palliative, to end-of-life care. According to Head, “[These three] phases in the patient journey are often fraught with difficult decision-making and a lack of smooth transition.”
3. Listen to examples of EOL treatments that successfully managed to provide tailored solutions, cater unmet needs and improve quality of life
This is a way of "ensuring you have the products that match individual choice, e.g. not have treatments that can only be used in an inpatient setting if the patients would rather be at home".
An EOL condition is a personal struggle. According to Head, because people vary greatly in terms of attitudes, abilities, preferences and beliefs, they also vary in what they need and want at this critical stage. “It is important to be flexible in what we offer, to understand our patients and our carers, and to respect and adjust our care to suit them, and not to adjust the care to suit ourselves as health professionals,” he emphasizes. Pharma can provide more research around personal choices, especially among cultural and faith differences. Head says this is a way of “ensuring you have the products that match individual choice, e.g. not have treatments that can only be used in an inpatient setting if the patients would rather be at home.”
Listening to people with similar struggles is a major form of support. Carers and family members, in particular, can gain social and psychological support from peers. Head recommends getting involved in social media communities, subscribing to YouTube channels, or joining old-fashioned evening classes, all of which provide media for people facing an EOL situation to share personal stories, learn from each other and study their EOL condition before it becomes too severe.
Head admits that, “EOL [care] is in shambles.” There are still ingrained practices, professional elitism, prejudice and risk-averse practices among health professionals that should be overcome. There are physicians who strongly advise against treatment from home and self-administering medication. Providing pharmaceutical products that require little or no training or medical supervision to administer would improve confidence in home care, both from the physician and the carer.
Improving the quality of EOL care is about preparing patients, carers and family members for the issues and challenges of EOL. Promoting patient confidence through an enhanced sense of control reduces confusion, stress and frustration for the patient and for those who are caring for them. Improvements in the patient journey mean a more discernible quality of life for the patient, even until the final moments. The pharmaceutical industry can play a vital role in this through the development of products that can be self-administered, services provided closer to home, and the provision of EOL education.
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