How can you ensure good end of life care for your relative living with frailty?
Kirsten Protherough
Delivering Frailty Training for Care Providers | Supporting Older Adults 65+ with Home-Based Holistic Health Care | Helping 40+ Achieve Healthier Aging
Over the Easter weekend, I read two fascinating books about ageing and dying, both written by doctors who work in Geriatrics and Palliative care (1,2). As a general practitioner who worked in community hospitals, these works reflected my own experiences.
They both argue that in our culture, medical advances such as vaccination programmes, antibiotic discoveries, increased sanitation, and occupational health rules have insulated us from death and made us fearful of it. As a result, as medical professionals, we sometimes prioritise longevity and preserving lives over quality and comfort. Individuals frequently die in hospitals undergoing futile investigations and treatment rather than at home or in the more comfortable surroundings of a hospice or care home.
Those of us with elderly relatives who maybe undergoing treatment for chronic disease, cancer, or those who are increasingly frail with increased falls, reducing mobility, weight loss and dementing processes, may consider that another hospital admission is not appropriate and being cared for at home (or in a care home) is the preferable option.
Familiar surroundings, with friends and family visiting at ease is more suitable than the acute hospital environment, which can be a sterile and confusing place for older adults living with frailty.
When is the right moment to explore quality of life as the priority?
In England, the average life expectancy for males is 79.3 years and 83.1 years for women. Although the course of deterioration in older persons living with frailty is less predictable than in those living with advanced cancer, death is inevitable for all of us.
Repeated hospitalisations, extreme old age, increased frailty such as weight loss, decreased mobility, increased falls, and an increased need for care all suggest that someone is in their final few years of life.
Discussing in advance our future wishes and preferences for care at the end of our life makes it simpler to adhere to them.
Prior knowledge enables you as the relative and the surrounding healthcare team to ensure the necessary documents (for example: RESPECT forms) and prescriptions are in place so if there is a rapid deterioration everything is there to enable the correct treatment and to keep the patient comfortable at home.
Other basic actions, such as making sure family members and carers have the appropriate numbers to contact in and out of hours, can help reduce worry and uncertainty.
When is the right moment to broach this subject?
Many scenarios, in my experience, prompt talks about death and dying and may be utilised as a gateway to converse on this issue, which, while difficult, should not be avoided.
Circumstances that may provoke a discussion regarding end-of-life care preferences:
Explore what "Matters Most"
My work in frailty has taught me that everyone, no matter how elderly or infirm, has a unique set of distinct priorities. Understanding what is most important to the individual is essential in developing personalised care plans.
It is preferable to discuss these issues while your loved one is feeling well and in control, rather than during a crisis. Utilizing RESPECT papers and literature as an aid might help facilitate these (often tough) talks.
The "Gold Standards Framework" and what it means for your relative
The gold standards framework is a register used in primary care by your GP to identify patients who maybe at risk of deterioration and dying within the next year.
It is becoming more widely accepted that "Frailty" is a clinical diagnostic, and persons with moderate to severe "Frailty" in their final year of life should be included in the Gold Standards Framework. If your relative is added to the register, they will be discussed in frequent meetings and a more proactive approach will be taken in the form of advance care planning conversations, which will include their desires if they decline and where they would want to die.
What about during Out of Hours and in Hospital?
As we all know, the NHS's Computer infrastructure is not interconnected across sectors. But, systems are in place to enhance after-hours access to your relatives' notes and documentation of their customised care plans, RESPECT forms, and advance care plans. Nevertheless, some paperwork, such as the RESPECT form, should accompany your relative. In the event of an unforeseen incident, it may also be good to have a copy of an up-to-date concise brief summary from EMIS or SYSTEM one. The GP surgery would be able to provide these brief summaries.
Key Teams involved in End of Life Care to connect with/ have the number for:
Healthcare teams work in many different places it is worth exploring which teams will be involved in your relatives care and how you access them - it maybe via one single point of access number or multiple numbers
Examples of key teams:
Symptom control at the end of life
Common symptoms of patients dying of frailty are those such as:
These symptoms can be distressing and can often go unmanaged if not recognised. Pain is underrecognized in patients who cannot express themselves and tools such as the "Abbey Pain Scale" can be used by the healthcare professionals to identify pain and its severity. Due to poor appetite and lack of fluids some patients with severe frailty can become agitated due to severe constipation, this can be relieved with enemas and laxatives and relief provides an immediate calming effect. As patients are coming to the end of their lives much of the medication they were once on is now irrelevant and more likely to cause side effects. A medication review is imperative for the removal of unnecessary medication or medication that cannot be taken orally and commence medication that may ease the symptoms via different routes (for example a patch on the skin, or a needle under the skin). Additionally input from nursing staff in the form of ensuring comfort in positioning, insertion of catheters (if necessary) and skin care becomes important to maintain comfort.
"Just in Case Medications"
"Just in case" medications are used to treat symptoms in the last few days of life. Symptoms such as pain, breathlessness, agitation and respiratory secretions are treated with medications such as: morphine, midazolam, levomepromazine and hyoscine. Often delivered via a needle under the skin and an automated syringe.
Their use is to treat symptoms such as breathlessness, pain, agitation and increased respiratory secretions. Often the uncertain and sudden nature of deterioration in patients living with frailty means that it is important to prescribe these medications in a timely manner. Often a deterioration will happen out of hours and access to these medications then is more problematic.
Sometimes patients living with frailty do not need any of these medications but having what is needed at hand "just in case" can be comfort in itself and reduce anxiety and uncertainty at a challenging time.
Bereavement care and grief
Caring for an elderly relative and going on the journey of their decline and death can be overwhelming. Taking care of yourself and your mental health is important. Inquire what bereavement advice and guidance is available to you. There will be local support available via hospices and there are national charities such as Cruse who can provide support and guidance (link provided below).
Finally: Three Key questions to ask your healthcare provider (with your relatives consent)
Useful resources/websites:
References:
In my Third Phase. Charity Trustee and Chair. Experienced NED. Former Chair of Bishop Fleming & University Governor. Living (hopefully) with Stage 4 Prostate Cancer. Worcestershire's High Sheriff in Nomination 2025/26
1 年Great, important, article Kirsten - thank you. By coincidence this is what I’m reading right now.