Families of older people dying of progressive chronic disease often feel insufficiently informed about the course of the illness, so when death occurs it can be felt as a surprise. However, this misperception of an ‘unexpected death’ could be minimised if only we provided our patients and their loved ones with information that includes an overall estimation of time to death. This is often delayed but could help both the patient and the family prepare for the inevitable, avoid unnecessary procedures, and allow the patient to make their care preferences known before a health crisis happens.
Factors that contribute to the default position of doing more in hospitals instead of communicating and consulting are: family requests for doctors to ‘not give up’; ready availability of life-support technology; clinicians’ lack of confidence in disclosing bad news; fear of taking hope away from the patient or family; cultural barriers to discussing death; peer pressure to save lives; lack of time for heart-to-heart conversations in busy clinical services; and shortage of community facilities to enable a peaceful death outside of acute care services. Rather than impairing quality of remaining life we should be considering a transition to supportive and palliative care.
An upcoming book to help us normalise these sensitive conversations is When the time comes – Stories from the end of life. This compilation of recent true short stories narrated by nurses, families, informal caregivers, dying patients, and older people themselves, all carry the message of how important it is to unveil in advance one’s values and preferences for end-of-life care to prevent non-beneficial treatments when a person is approaching death from advanced age and natural causes.
Some chapters in the book highlight how some people are ready to embrace mortality while others opt to be in denial; some tell that advance health directives are a safe step to prevent unnecessary suffering and honour patient’s preferences; and others reveal the regret associated with making decisions on behalf of loved ones without prior knowledge of their dying wishes. The reflection questions at the end of each chapter engage readers in their own inner discussions about care choices, preferred place of death, perception of appropriateness of hospitalisation, and conflict between the patient’s best interest and the family’s emotional needs to keep the loved one alive. Families of people approaching the natural end of their lives, as well as clinicians and students of healthcare professions can benefit from considering these scenarios.
Normalising end-of-life discussions and honouring patient’s preferences is everyone’s responsibility: health professionals have a duty to identify low-value care and prevent harm near the end of life; the public has a duty to minimise high expectations that technology should be used at all costs to prolong life; universities have a duty to improve healthcare trainees’ communication skills; and health systems should enable time for discussions and monitor alignment of goals of care with treatment provided.
Dr Magnolia Cardona, PhD, MPH, MBBS, Nurse Ebony Lewis, MIPH, BN – Authors of When The Times Comes (published Hammersmith Books, 25th March, £14.99)
Dr Magnolia Cardona is a former GP, public health practitioner and current associate professor of health services research. She is a passionate advocate for the rights of older people dying of natural causes to not be over-treated with low-value care and instead have a dignifying end of life through aligning treatments with patients values and planning in advance. She arranged her own first advance care directive before the birth of her child by elective caesarean, as she envisaged the possibility of things going wrong and had the urgency for planning what clinicians and her family should do if she couldn’t decide. She now conducts research with patients, families and clinicians on ways to improve the end-of- life experience for all.
Nurse Ebony Lewis is experienced in emergency medicine and geriatrics, a skills combination that made her highly aware of the needs of older people to be treated compassionate at a place of their choice including their own home rather than in the emergency department environment or the intensive care unit. She loves talking to older patients, visiting them at home for their health assessments, and helping them express their values and preferences before they become critically ill. She was awarded an international prize for her research into advance care documentation and is now undertaking her PhD studies on frailty.