The Scottish Academy of Medical Royal Colleges (the ‘Scottish Academy’), the Royal College of Physicians of Edinburgh (the ‘College’), Marie Curie and Scottish Care have co-produced new guiding principles, designed to ensure that dying patients in Scotland are treated humanely, compassionately and with dignity during the COVID-19 pandemic. They want the Scottish Government to adopt the guidelines as a matter of urgency.
The principles say that all patients in Scotland who are judged to be dying from COVID-19 or other terminal conditions - within hours or days - must receive equal access to visits from family or friends.
Deaths from COVID-19 and other diseases and illness occur across the entire range of care facilities in Scotland. Patients die at home, in nursing and residential homes, in hospices, community hospitals, general wards of acute hospitals, emergency departments, and high dependency and intensive care units.
Although a national approach to end of life visiting is essential, current UK Government guidance on travel from home during COVID-19 does not explicitly specify that visits to a dying family member is allowed.
As a consequence, inconsistent interpretations of this guidance mean that variable policies are in place. Some are more stringent, and limit or may entirely exclude access of family to a patient dying of COVID-19. Other approaches are more lenient and permit exceptions sometimes without explicit consideration of the wider implications of population harm or PPE limitations.
The new principles therefore set out a path to allowing family or friends to safely visit dying patients using the correct personal protective equipment, treating all dying patients equally with dignity and compassion, while protecting other patients, visitors and healthcare workers.
Commenting, Chair of the Scottish Academy and GP, Dr Miles Mack said:
“It is absolutely essential that family and friends understand the access they should expect when they visit a dying patient to whom they are close, across all care settings including nursing and residential homes, hospices, and hospitals. That should remain the case during the COVID-19 pandemic and we should redouble our efforts to ensure that families and patients have equal access to visits. But this must also be done in a way which protects healthcare staff, other patients, and visitors. That is why we have published these new guiding principles, which we hope will be adopted by all primary, secondary and community care settings in Scotland at the direction of the Scottish Government.”
Professor Andrew Elder, president of the Royal College of Physicians of Edinburgh and Geriatrician said:
“Decisions regarding the presence of family at the bedside of their dying relative are not simply matters of infection control. And we should not permit them to be such. They are matters of our humanity; matters that define who we are, our understanding of what life is, and how our lives must end. We know how we will make people feel if we unnecessarily prevent them from being with a loved one at the time of their death. We do not need to make them feel that way; we can find ways to allow families to be together at this time. With personal protective equipment, social distancing, and isolation, family members can balance risk to themselves and others just as the caring professions do. We are calling on the Scottish Government to adopt our principles to support families to visit their loved ones at this sombre and difficult time.”
Dr Donald Macaskill, Chief Executive of Scottish Care said:
“This guidance is extremely important for all settings. Being able to be with someone as they die is very important. Care homes will attempt to enable this to happen wherever possible and this Guidance is very helpful in supporting this effort.”
Julie Pearce Chief Nurse, Executive Director of Quality & Caring Services, Marie Curie said:
“Marie Curie cares for people coming to the end of their lives every day and we know just how important that moment of good bye is between the person and their family and friends. Even during this pandemic, wherever possible, we should try to make this happen in person. The chance to say goodbye is so important and if missed can have a huge impact on the person’s last moments and their family and friend’s grief and bereavement. We can work with staff and families to ensure that PPE is in place to keep people as safe as possible. Where visiting in person is impossible then we know that staff are committed to facilitating virtual visits and making the connections with families in the best way they can, in a kind, compassionate and personal way. We fully endorse these guidelines published today, and hope that they are adopted by the Scottish Government and considered right across the UK.”
Patients and Family at the End of Life
Implications of COVID-19
When patients are judged to be dying within hours or days, the presence of family1 at their side for short visits, or longer stays, is vital to palliative and end of life care and a timeless part of the human experience of life and death. It provides comfort not only to the dying patient, but also to those present, and the inability to be present is a source of anxiety, distress and moral injury that may be long-lasting.
The COVID-19 pandemic has created concerns relating to visiting. Visitors could contract infection from a patient dying of COVID-19 and thus come to physical harm themselves. They could also spread the infection to others outwith the care setting where the patient is dying. Limiting ‘footfall’ through any inpatient or residential care setting forms an important aspect of risk reduction for staff and other patients.
Limiting travel in the wider community has been an equally important aspect of Scotland’s effort to reduce deaths from COVID-19 and so enabling visiting, even when limited to the end of life, sat at odds with that risk reduction measure. Although the national updated principles on visiting noted end of life visiting as essential, Government guidance for the public on travel from home did not explicitly specify visits to a dying family member as permissible.
As a consequence, inconsistent interpretations of this guidance mean that variable policies are in place. Some are more stringent, and limit or may entirely exclude access of family to a patient dying of COVID-19. The risk of moral harm for care staff in being required to repeatedly enforce these restrictions and absorb the resultant distress of families cannot be underestimated, and this is not acknowledged in current ethical decision-making guidance.
Other approaches are more lenient and permit exceptions to be made apparently without explicit consideration of the wider implications of population harm or PPE limitations. Knowledge of this causes significant staff and family distress in facilities where more stringent restrictions are in place.
Importantly, such restrictions are in place in some settings for patients who are dying of diseases other than COVID-19. In this case there is no risk to family of contracting the disease from the patient, although risk may occur if the care facility has other patients with the disease. However, family could bring the disease into the facility, and thus increase the risk of other patients of contracting COVID-19.
Deaths from COVID-19 and other diseases and illnesses occur across the entire range of care facilities in Scotland. Patients die at home, in nursing and residential homes, in hospices, community hospitals, general wards of acute hospitals, emergency departments, and high dependency and intensive care units. Concerns about visiting are legitimate but responses to them should not only be governed by principles of infection control at local and population level, but also by moral and ethical principles.
We therefore suggest how a simple ethical framework can be applied to the issue of family presence at the time of death.
All patients, wherever they are dying and whatever they are dying from, should be offeredgood quality and compassionate care.
Family presence should be considered equally across all care settings, and for patients dyingwith and without COVID-19
- Minimising Harm
Harm from visiting can occur to the visitor, to those they subsequently come in contact with,or to others in the care facility. The patient themselves may experience harm if they feel guiltabout exposing family visitors to the infection.
That harm must however be balanced against harm to the dying person occasioned by absenceof family, harm to family who are unable to be present (both immediate and longer term inbereavement), and harm caused to care staff who substitute themselves for absent family andundertake difficult telephone communication.
- Working Together
A patient’s current or previously known wishes about their own end of life care should betaken into account.
Clinicians should act with honesty and integrity in their communication with patients andshould communicate and document decisions regarding visiting and the reasons behind themtransparently.
Organisations have a responsibility to ensure that staff are aware of and engaged with therationale for the local guidance. There must be transparency in how the competing factors ofsocial responsibility, PPE resource, and direct and indirect risk of infection and of psychologicalharm are being balanced.
As the clinical situation evolves both at the individual and population level, decisions will needto be kept under review with clear guidance at national level.
Where there are resource constraints, patients should receive the best care possible, whilerecognising that there may be a competing obligation to the wider population.
- Capacity and Consent
The capacity of family to provide informed consent relating to the risks associated with visitingshould be taken into account as should the capacity of the patient to receive visitors.
The following practical principles emerge from this ethical framework.
These principles do not represent a series of rules, to be applied rigidly. They are simply principles, to be considered and applied flexibly, humanely and sensitively in the particular context of each patient and their family.
- All patients who are judged to be dying from COVID-19 or other conditions within hours ordays are entitled to receive visitors. That entitlement is however qualified by the following.
- Visiting arrangements will aim to best serve the needs of patients and their families, but mayneed to change at short notice in light of local or national changes in COVID-19 relatedrestrictions.
- To the greatest extent possible, and recognising that visiting can be emotionally and physically exhausting, a limited number of family members should represent the family over the period of the patient’s decline and death.
- When possible, the patient should consent to receive visitors, if not, their previously known wishes or judgement of a legally appointed proxy decision maker or closest relative should be taken into account.
- When possible, visitors should provide informed consent that they understand the personal risks associated with visiting.
- In all cases, visitors must agree to undertake the subsequent isolation and quarantine restrictions appropriate to the contact that has occurred in association with their visits.
- In all cases, visitors must consent to wear Personal Protective Equipment and undertake all other relevant hygiene requirements equivalent to that used by care staff in the specific care facility. Support should be provided to put on and remove equipment as necessary.
- Anyone who is unwell and/or exhibiting symptoms of COVID-19 - a new, persistent cough and fever or high temperature - should NOT visit any patients in a hospital or other care facility.
- Care facilities are entitled to limit the frequency of visits, duration of visits, or numbers of visitors in accordance with the risk to other patients, other care staff, or other practical considerations in the care setting. However, the reasons for this must be documented and be in accordance with the framework outlined above.
- Clinical teams in more acute settings, particularly ICU and HDU, should receive support in family liaison from other staff members, including chaplaincy, bereavement and counselling services, thus enabling them to focus on direct patient care.
- Care facilities should support family who cannot visit by providing access to and support in the use of mobile tablet or handheld communication devices to patient and family, particularly if a family cannot provide these for themselves.
- For those managing visits in care home settings, reference should also be made to the Scottish Government's guidance on this topic.
 Family in this context means those related by blood, through marriage, or close friends.