How can you ensure good end of life care for your relative living with frailty?
I read two intriguing books about ageing and dying during the Easter weekend, both authored by doctors who practise in Geriatrics and Palliative care (1,2). These works represented my personal experiences as a general practitioner who worked in community hospitals.
They both contend that in our culture, medical improvements such as vaccination campaigns, antibiotic discoveries, improved sanitation, and workplace health regulations have both protected us from death and made us frightened of it. As a result, as physicians, we sometimes value longevity and life preservation over quality and comfort. Individuals sometimes die in hospitals after being subjected to useless examinations and treatments, rather than at home or in the more comforting settings of a hospice or care home.
Those of us who have elderly relatives undergoing treatment for chronic disease, cancer, or who are becoming increasingly frail with increased falls, reduced mobility, weight loss, and dementia processes may believe that another hospital admission is not necessary and that being cared for at home (or in a care home) is the preferable option.
The acute hospital atmosphere, which may be sterile and perplexing for older persons living with frailty, is less preferable than familiar surroundings, with friends and family visiting at ease.
In England, men have an average life expectancy of 79.3 years and women have an average life expectancy of 83.1 years. Although the path of deterioration in fragile older people is less predictable than in individuals with advanced disease, death is unavoidable for all of us.
Repeated hospitalisations, severe old age, increased fragility such as weight loss, decreased mobility, increased falls, and an increased need for care all indicate that someone is approaching the end of their life.
Discussing our future intentions and preferences for end-of-life care in advance makes it easier to follow through on them.
Prior knowledge allows you, as a relative, and the surrounding healthcare team to ensure that all necessary documents (for example, RESPECT forms) and prescriptions are in place so that if there is a rapid deterioration, everything is in place to enable the correct treatment and keep the patient comfortable at home.
Other simple efforts, such as ensuring family members and caretakers have the correct phone numbers to call in and out of hours, can help decrease concern 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:
- Following a care crisis characterised by a decline in health and function
- Upon admission to a nursing home or rehabilitation unit
- Following repeated hospitalisations (which are often detrimental in patients living with frailty)
- A close friend, family, or spouse’s death
- TV shows that investigate or address end-of-life issues
- When Finances, Lasting Power of Attorneys and Wills are organised and discussed
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:
- District Nursing team
- Palliative care team
- Neighbourhood team
- Social services
- Older adult mental health team
- GP surgery
- Out of hours team (usually NHS111)
Symptom control at the end of life
Common symptoms of patients dying of frailty are those such as:
- Constipation
- Anorexia
- Confusion
- General weakness
- Pain
- Pressure sores
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)
- Do you think my relative is in the last year of their life?
- Is my relative on the Gold Standards Framework?
- Does my relative have a RESPECT form and an advanced care plan?
- When would be the right time for a prescription of “Just in Case” medications?
- Should they have a copy of their brief summary in case they worsen out of hours?
- What key contact numbers do I need?
Useful resources/websites:
ReSPECT | Resuscitation Council UK
Home – Cruse Bereavement Support
References:
- Home – WITH THE END IN MIND – Kathryn Mannix
- The Book About Getting Older by Lucy Pollock | Waterstones
- Top Tips: End of Life and Palliative Care in Frailty (medscape.co.uk) by Maggie Keeble
- The Abbey Pain Scale – click link below
Microsoft Word – H387 Abbey Tool.doc (gloucestershire.gov.uk)
