Recently, there has been a noticeable shift in the provision of end-of-life care EoL care from hospital to patients' own places of residence in the community (Nuffield Trust, 2019). The Queen's Nursing Institute (QNI) (2020) recognised that the skilled responsive service that community specialist practitioner district nursing (CSPDN) teams provide is ideally placed to support patients requiring EoL care. This shift in healthcare has been encouraged by the NHS, as identified in the Long Term Plan (NHS England, 2019), promoting community health teams to nurse patients in their homes rather than be hospitalised. Hence, CSPDNs and their teams are in an influential position to promote tissue donation within the community setting. Similarly, guidance from the Nursing and Midwifery Council's (NMC) (2001) standards for specialist education and practice, emphasises how CSPDNs should support and empower patients and their families to influence and encourage participation in planning their care by providing the information required to make choices Despite this, it has been found that tissue donation is not actively promoted in community settings.
Why is tissue donation important?
Unlike organ donation, which needs to take place within the acute setting on a living human, human tissue donation can be offered within the community up to 48 hours after death (NHS Blood and Transplant, 2020a). Human tissue consists of cells that have a comparable presentation and function and can include donations such as heart valves, corneas, skin, bone and tendons, each of which can be used in different ways, as outlined in Table 1 (NHS Blood and Transplant, 2020a). Tissue donation can dramatically improve quality of life for many people, with a single donor being able to support up to 50 tissue transplant recipients (NHS Blood and Transplant, 2020). It is reported that, anually, 2600 patients receive 8500 implants from tissues collected from living and deceased donors (NHS Blood and Transplant, 2020b). Further, the Department of Health and Social Care (DHSC) (2019) suggested that 3500 people had their eyesight restored in 2019 through receiving donation alone, although approximately 700 people remain on the transplant waiting list for eye donation.
Table 1. Tissue donation
| Tissue considered for donation | |
|---|---|
| Cornea | The cornea is the clear tissue at the front of the eye. People with vision damage due to diseases, injuries or birth defects can receive a corneal transplant and be able to see again. Most people can be cornea donors unless they are over the age of 94 years |
| Heart valves | Some people are born with heart defects; heart valves can be used to repair such defects in both adults and children |
| Skin | People benefit from skin being donated, as it can act as a primary dressing to treat people with serious burns by stopping infections and reducing scarring and pain |
| Bone | Bone can be used in bone grafts, which can restore health and mobility to many patients |
| Tendon | Tendons attach bones and muscles to each other; donated tendons can be used to help rebuild damaged joints |
Legislation
In 2017, the UK Government recognised that a change was needed to significantly improve the lives of those waiting for donation, as many die while awaiting transplantation. The rate of donation has been low in previous years: although 80% of people stated verbally that they would like to be a donor, only 37% of people independently signed the organ donation register (DHSC, 2019). As a result, the law was changed, and every person above the age of 18 years in England is to be considered for organ and tissue donation, with the exception of a small population group who would be automatically excluded, as outlined in Table 2 (NHS Blood and Transplant, 2020a). Previous guidance used to have an age limit of 95 years for tissue donation, beyond which people were not considered for tissue donation; however, this guidance has changed recently because of low availability of tissues in banks.
Table 2. Criteria for exemption from being a tissue donor
| Criterion | Explanation |
|---|---|
| Eye disease | Those aged 86 years and older or those with any trauma to the eye are exempt. Those with eye problems but younger than 85 years can still donate |
| Neurodegenerative conditions |
|
| Certain cancers | If the primary cancer is unknown or is blood borne, the person is exempt |
| COVID-19 | All patients suspected or confirmed to have COVID-19 are automatically exempt |
Members of the public were actively involved in a consultation for the first time in history, and the ability to ‘opt-out’ or ‘deemed consent’ was passed by Parliament and went live in the year 2020 under the Organ Donation (Deemed Consent) Act (2019). Therefore, everyone is considered a donor unless wishes are expressed in advance, they have been excluded due to a certain medical history or age or have opted out on the organ register. Controversially, despite the law, tissue donation occurs after death, with patients' families having the ultimate decision of consent (DHSC, 2020). With families needing to support the decision to donate, NHS Blood and Transplant (2021) has urged patients to discuss their wishes with family.
The Human Tissue Act 2004 regulated by the Human Tissue Authority (HTA) (2020a) has a provision for human tissue donation, and the authority acts to safeguard the retrieval of tissue, provide security and protect the donor from DNA theft. The HTA trusts that these safeguards will encourage more people to donate for transplant, scientific and medical research (HTA, 2020a).
Why promote community donation?
In practice, despite tissue donation being a consideration of EoL care planning, it has been observed that there is a lack of training, guidance resources, information and support for health providers involved in tissue donation. The trust considered in this article (Lancashire and South Cumbria NHS Foundation Trust (LSCFT)) has a local practice population of 143 135, with a life expectancy of 75 years (Lancashire County Council (LCC), 2020a). There were 494 611 recorded deaths in England in 2019 (Public Health England (PHE), 2021), of which 44.9% of total deaths in England occurred in hospital, and 46.9% of deaths occurred in the patient's own home or care home, demonstrating a 9% increase from 10 years previously (PHE, 2021). Some 3458 deaths of these deaths were registered in the local practice population (LCC, 2020b). According to EoL data from the LSCFT of patients for the same practice population who have died while on DN caseloads, on average in 2019, there were 900 deaths, of which 108 occurred in care homes; in 2020, 888 deaths occurred, of which 120 deaths occurred in care homes. However, LSCFT data indicate that only three referrals for tissue donation where made to the local retrieval centre. Based on England-wide statistical data from 2019, of the 46.9% of deaths occurring at home or in a care home, 49% of patients were known to DN teams, indicating missed opportunities to discuss patients' wishes.
In the north-west of the UK, the referral process for tissue donation is considered simple, as also observed in practice. Locally, the historic process was to complete a detailed referral form after death and send it to the bereavement and donation team within the local hospital. Local protocol stipulates that this could only be carried out following a VoD by a GP. In practice, it is reported that the deceased could wait up to 6 hours or more for this to take place, thus limiting the referral and retrieval time. Further, it goes against the National Institute for Health and Care Excellence (NICE) (2017) guidelines to promote VoD in a timely manner. Timely VoD is further highlighted by the Royal College of General Practitioners (RCGP) (2020) in order to support grieving families, avoid infection cross-contamination and support public health during the pandemic. In response to the pandemic, in order to support the NHS, the DHSC (2020) placed the onus to undertake timely VoD on community staff, thereby reducing delays that could cause further distress to bereaved families. The North West EoL Care Model (NHS Cheshire and Merseyside Strategic Clinical Networks, NHS Greater Manchester Lancashire and South Cumbria Strategic Clinical Networks, 2015) also advocates VoD by nurses to support bereaved families and inform the relevant services involved in the patient's care following death; however, the model has no guidance on and makes no reference to promoting tissue donation.
Barriers influencing referrals
CSPDNs are community team leaders, with the skills and knowledge to lead services (NMC, 2001). CSPDNs build therapeutic relationships with patients and families, are patient advocates, experienced referrers, and experts in palliative care who are adept in advance care planning (ACP) (Aldridge-Bent, 2012). With these skills, it is reasonable to expect the CSPDN to be able to explore the patient's wishes and preferences surrounding tissue donation. Additionally, tissue donation preferences are referenced in the local DN nursing assessment that every patient has when admitted to the caseload. A further opportunity to explore tissue donation is referenced in the LSCFT's EoL care plan when the patient is deemed to be in the last days of life. Despite there being these two opportunities to discuss tissue donation, a recent audit of 20 EoL care records at the LSCFT indicated that this had only been achieved with 50% of patients.
Anecdotal feedback from community staff indicates that, in practice, failure to discuss tissue donation as part of EoL care planning may be a result of the community team's lack of training and resources, and this affects their confidence to articulate themselves when approaching the subject. CSPDNs who lead nursing teams play a vital role in facilitating and delivering EoL care, with over 40% of time dedicated to EoL care planning, providing emotional support and care planning after death (QNI, 2020). Effective conversations that are collaborative, supportive, informative and compassionate explaining donation, the benefits and its value will contribute to patients and families reaching an optimal informed decision to donate (Shemie et al, 2017).
Deceased tissue donation is considered complex, with health professionals often finding discussions around the topic stressful, as the shift occurs from curing a patient to caring for the deceased. It has proved a challenge over the years, even with the most experienced leaders in nursing teams requiring expert levels of knowledge and skills in communication to have these conversations (NHS Blood and Transplant, 2020c).
Due to the subject not being explored between nurse and patient, wishes and preferences are often not addressed or respected. Patients often believe that, due to having complex medical conditions, they are automatically excluded, but this is not the case. A small percentage of patients is excluded for not meeting the criteria as outlined by the local trust's supporting document (Table 2). However, this conflicts marginally with the NHS Blood and Transplant (2020b) organ and donation team, who advise that anyone aged over 18 years and having only a minor exclusion criteria (such as human immunodeficiency viruses, Creutzfeldt-Jakob Disease and cancer that has spread over the past 12 months) can be a donor. A further consideration is that the local tissue donation retrieval centre only retrieves corneas, but, if other tissues are required, the National Referral Centre (NRA) will organise this from a wider partnership (NHS Trust, 2020). This could be confusing for both staff and patients as the guidance and retrieval offer differ locally and nationally.
It is ultimately the decision of family members to consent to tissue donation after death (DHSC, 2020). Therefore, even when a patient has expressed their wishes to be or not be a tissue donor, families can override the patient decision if they have a different view or belief (DHSC, 2020). Healey (2011) suggested that many families are not on board with the decision due to a lack of understanding and information. Moreover, they are in a vulnerable and emotional predicament, which often makes it difficult to make decisions (Shemie et al, 2017).
Issues around safety delivery
As mentioned above, a new law was introduced by the Government implementing a system of deemed consent that every person over the age of 18 years is to be considered for organ and tissue donation unless they actively choose to opt out (HTA, 2020b). Despite this, in practice, the National Referral Centre (NRC) is not automatically informed of a community death, and thus the donation does not occur unless the health professional or family facilitates it. Due to the barriers previously mentioned, the practice of discussing and facilitating community tissue donation has not yet been accomplished, and, in the absence of automated referral into the NPC, it could be considered that community nursing teams are not complying with the new law.
The General Medical Council (GMC) (2020) recently published guidelines for ACP, and under communication, partnership and teamwork, these guidelines highlight that patients must be given the right to have their preferences, including tissue donation, explored and that they must be given the information they need to make the appropriate decisions and state their preferences surrounding their care. Although the guidance is aimed at doctors working in palliative medicine, in practice, it is often the CSPDN teams who are building therapeutic relationships and planning and facilitating EoL care. Additionally, DN teams are working daily with patients face to face within their own place of residence. In response to the pandemic, the ways of working for GPs have changed to involve remote working and digital consultations (RCN, 2020). Therefore, at times, CSPDN teams can be the only professionals closely involved in EoL care and, as such, they are in a prime position to lead conversations about tissue donation.
Nurses have a professional, legal and moral obligation to abide by the laws of the country in order to practice effectively, protect patient safety and promote professionalism while heeding patient preferences and not making assumptions (NMC, 2018). Therefore, it is reasonable to expect nurses actively involved in supportive EoL care to explore options for tissue donation in order understand patients' personal beliefs, valves and expectations. The NHS Five Year Forward plan (NHS England, 2014) made a promise to support bereaved families by improving communication and letting patients and communities have control of their own health, which was recognised as an area of improvement to improve patient safety, although the King's Fund (2018) questioned whether this has been realised.
What is needed to promote community tissue donation?
The HTA is working to provide practical guidance for healthcare staff working to promote tissue donation (HTA, 2020b). A nationwide training module was introduced by the blood and transplant team for acute staff, as they recognised the complexities of approaching the subject with patient families (NHS Blood and Transplant, 2020c), but no specific training has been made available for community staff. Due to the lack of donations and patients' wishes not being met or explored, a solution in the area of practice was to highlight and deliver guidance at every community team level. Building of relationships between the local community and acute trust has recently enabled clarification of the directly referral to the NRC process. Additionally, for ease of access and to encourage discussion, the contact number for the NRC has been incorporated on the VoD form. Referral will consist of providing the patients' personal details and brief medical history to the call handler and then, if suitable, the retrieval is arranged via either the retrieval team from the NRC or by tissue and eye donation partnerships (Local Policy, 2020). The local acute trust has shared educational material where this has been added to the local trust's training surrounding EoL care, care after death, and VoD for all CSPDN teams. This training will also teach staff to act as champions for tissue donation in their local teams. In order to continue to raise awareness, the local acute trust has also committed to providing feedback to DN teams following a retrieval.
Conclusion
The Organ Donation (Deemed Consent) Act (2019) has recently been introduced stipulating that unless a person opts out or does not meet the criteria, they should be considered for both organ and tissue donation. CSPDN teams, who build therapeutic relationships with patients and families and lead on EoL care in the community, are in a prime position to promote, discuss choices and realise patient preferences for tissue retrieval in line with their professional, legal and moral obligations. In order to overcome the barriers of lack of knowledge among staff and lack of guidance around the tissue donation process, a relationship with the local acute trust has been built and resources have been shared to enable the local trust to provide an tissue donation educational package and designate local team champions to raise awareness. Additionally, procedural changes will support practice and help CSPDN teams to initiate discussions and explore preferences around tissue donation at the ACP stage.
KEY POINTS
- Promoting tissue donation is consider a simple process, but the referrals remain low, while many patients die while waiting for donation
- The Organ Donation Act (2019) states that all adults over the age of 18 years are to be considered organ and tissue donors, with a few exceptions
- All health professionals have a legal, professional and moral obligation to explore tissue donation with patient and their families, as well as provide information about it
- Community specialist practitioner district nursing teams are in a prime position to promote tissue donation given their strong relationships with patients in the community and involvements in advance care planning and care after death
- Communication, educational sessions and incorporating the National Referral Centre contact number on the verification of death form can increase the uptake of referrals
CPD REFLECTIVE QUESTIONS
- Can you explain the differences between organ and tissue donation?
- Do you, as a health professional, feel capable and confident to discuss tissue donation with a patient or their family?
- What protocols and guidelines do your trust have in place regarding the tissue donation referral process?
- What can you do in practice to promote tissue donation?