Intensive and Critical Care Nursing (2014) 30, 275—282

Available online at www.sciencedirect.com

jo ur nal homepage: www.elsev ier .com/ iccn

The core of after death care in relation toorgan donation — A grounded theory study

Anna Forsberga,b, Anne Flodénc, Annette Lennerlingd,e,Veronika Karlssonf, Madeleine Nilssong, Isabell Fridhe,h,∗

a Department of Health Sciences at Lund University, Box 157, SE-221 00 Lund, Swedenb Skåne University Hospital, Department of Transplantation and Cardiology, SE-221 85 Lund, Swedenc School of Health Sciences, Jönköping University, PO Box 1026, SE-551 11 Jönköping, Swedend The Transplant Center, Sahlgrenska University Hospital, SE-413 45 Gothenburg, Swedene Institute of Health and Care Sciences, University of Gothenburg, PO Box 457, SE-405 30 Gothenburg,Swedenf School of Life Sciences, Skövde University College, Box 408, SE-541 28 Skövde, Swedeng Queen Silvia’s Children Hospital, Sahlgrenska University Hospital, SE-416 85 Gothenburg, Swedenh School of Health Sciences, University of Borås, SE-501 90 Borås, Sweden

Accepted 12 June 2014

KEYWORDSAfter death care;Brain death;Grounded theory;Intensive care nurses;Organ donation

SummaryObjectives: The aim of this study was to investigate how intensive and critical care nursesexperience and deal with after death care i.e. the period from notification of a possible braindead person, and thereby a possible organ donor, to the time of post-mortem farewell.Research methodology: Grounded theory, based on Charmaz’ framework, was used to explorewhat characterises the ICU-nurses concerns during the process of after death and how theyhandle it. Data was collected from open-ended interviews.Findings: The core category: achieving a basis for organ donation through dignified and respect-ful care of the deceased person and the close relatives highlights the main concern of the 29informants. This concern is categorised into four main areas: safeguarding the dignity of thedeceased person, respecting the relatives, dignified and respectful care, enabling a dignifiedfarewell.Conclusion: After death care requires the provision of intense, technical, medical and nursing

interventions to enable organ donation from a deceased person. It is achieved by extensivenursing efforts to preserve and safeguard the dignity of and respect for the deceased personand the close relatives, within a© 2014 Elsevier Ltd. All rights re

∗ Corresponding author at: School of Health Science, University of BoråE-mail addresses: anna.forsberg@med.lu.se (A. Forsberg), anne.flode

(A. Lennerling), veronika.karlsson@his.se (V. Karlsson), madeleine.nilsso

http://dx.doi.org/10.1016/j.iccn.2014.06.0020964-3397/© 2014 Elsevier Ltd. All rights reserved.

n atmosphere of peace and tranquillity.served.

s, S-501 90 Borås, Sweden. Tel.: +46 701722728.n@hjj.hj.se (A. Flodén), annette.lennerling@vgregion.se

n@vgregion.se (M. Nilsson), isabell.fridh@hb.se (I. Fridh).

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76 A. Forsberg et al.

Implications for Clinical Practice

• A supportive ICU-environment and a well-organised hospital structure developed for organ donation facilitate inten-sive care nurses’ work when performing after death care.

• To create awareness and include all clinical staff involved in the homage of the dead person means respecting thedonor and brings dignity in the situation.

• Facilitate the family members grieving process by enable a farewell to their loved one before the donation and a lastfarewell when the body is cold.

• Invite the family members to a follow-up meeting with the clinical staff involved in the patients care.

ntroduction

he aim of this study was to investigate how intensive andritical care nurses experience and deal with after deathare i.e. the period from notification of a possible brain deaderson and thereby a possible organ donor to the time ofost-mortem farewell. An increasing number of people aren need of a transplant for their survival. Great efforts areade in European Member States to increase the number ofonated organs (Commission of the European Communities,008).

Organs for transplantation are mainly retrieved from ven-ilated patients declared dead by brain death criteria. Theseatients are cared for in the intensive care unit (ICU) whereurses have an extremely important role to play in the man-gement of the procedure around organ donation.

Whilst the media has drawn the public’s attention to theack of organs and to the plight of the potential recipient,he tragedy and the circumstances behind the death of theotential organ donor are seldom given much attention inhis publicity. However, this is precisely the scenario facingCU-nurses when taking care of potential organ donors andheir families (Flodén and Forsberg, 2009; Pearson et al.,001). The care of dying patients forms a part of theursing profession, irrespective of the caring context ands thus included in intensive care nursing (Efstathiou andlifford, 2011). Although the percentage of ICU deaths variesetween countries and settings, the number of patientseclared dead using brain death criteria forms only a minor-ty of the number of patients who end their lives in the ICU.onsequently, the care of these patients is rarely a routineatter for nurses in most ICUs.The goal of intensive care is to save lives. When, in

pite of the very best medical efforts a life cannot beaved, nurses do everything possible to ensure that theatient is given a dignified death (Fridh et al., 2009a; Hawleynd Jensen, 2007). When a patient dies, care of the bodyecomes a normal part of nursing care (Hadders, 2007).hen a patient is on a ventilator and suffers from cessa-

ion of brain circulation, the course of death takes anotherrajectory and death is diagnosed by brain death criteria. Ifhe patient is identified as a potential organ donor, the bodys kept on the ventilator until the donation operation is per-ormed. This unique form of ‘‘after death care’’ appears

heart stops beating, death is the expected final result ofthis process. When it comes to cessation of brain stem cir-culation, death notification itself can be considered as aprocess. When caring for a patient on a ventilator, physicalsigns such as a sudden drop in the heart rate and a drasticallyincreased blood pressure can be signs that the patient hasprobably had a herniation and that death is close. However,these signs are not always obvious due to the use of variousvasoactive drugs and the transition from dying to death canbe invisible to the eye. Death must therefore be establishedafter the event and by other methods, i.e. clinical neuro-logical examination, cerebral angiography and/or computertomography.

Even if nurses may find these situations burdensome,there is also a growing clinical but tacit acceptance thatexperienced nurses handle this type of care in a very profes-sional way. It is important to explore and explain how nursesdeal with and describe the nursing care process during theseevents, in order to expand clinical as well as theoreticalknowledge in this field.

Methods

Design

We utilised grounded theory (GT) according to Charmaz(2010). This is because after death care and the dona-tion process involve a great deal of social interactions. Inthis study the focus was on how intensive and critical carenurses experience and deal with after death care, i.e. theperiod from notification of a possible brain dead person andthereby a possible organ donor, to the time of a post-mortemfarewell.

Context

In Sweden, almost all critical care nurses have a diplomain intensive care nursing which is acquired by a one yearpost graduate university education. During this course nursesreceive in-depth training in end-of-life care within the ICUas well as in nursing ethics and nursing sciences. Accordingto Swedish legislation, every hospital should have a DonorResponsible Physician and a Donor Responsible Nurse who

olely in intensive care settings and is mainly performed byurses (Monforte-Royo and Roque, 2012).

Except for unexpected and sudden deaths, we normallyonsider end-of-life care and dying as a process. When the

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upport the ICU-staff when a possible organ donor is iden-ified, as well as distinct guidelines covering the practicalerformance of organ donation in order to support the organonor process. The ICU-staff members are also offered the

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The core of after death care in relation to organ donation

opportunity to participate in the European Donor HospitalEducation Programme (EDHEP) (Blok et al., 1999).

Ethical approval

Since the study did not involve patients, ethical approvalwas not required under the Swedish Act concerning the Eth-ical Review or Research Involving Humans (SFS, 2003:460).Nevertheless, the ethical aspects are in accordance withthe Helsinki Declaration (World Medical Association, 2008)and the Ethical guidelines for nursing research in the Nordiccountries (2011) in respect of requirements related to infor-mation, consent, confidentiality and utility. All informantsreceived written and oral information about the study, andwritten consent was obtained before each interview.

Settings and participants

The selection criteria for participation in the study werecritical care nurses (ICU-nurses) currently working in an ICUand having experienced caring for a brain dead patient.We added so-called focused selection to the methodologicalgrounded theory process, between the point of departureand the theoretical selection, where we included ICU-nursesfrom units well known for being well-organised in the careof potential organ donors. In line with Charmaz (2010),the categories and theory were developed from informa-tion revealed by the researchers through their theoreticalinterpretations of the participants’ subjective experiences.

The selection was performed in a step by step fashionand reported in Table 1:

1. The first step involved adopting a so-called ‘‘point ofdeparture’’, in which we defined the participants andinclusion criteria by re-analysing interviews previouslyanalysed by a phenomenographical method and reportedby Flodén and Forsberg (2009) and Flodén et al. (2011).The point of departure might also be described as con-venience sampling where the participants commonly areselected on the basis of accessibility. We choose thismethod of sampling and re-analysed previous interviewsat the beginning of the project to identify the scope,major components, and trajectory of the overall pro-cess. The informants represented different hospital carelevels (i.e. local, regional and university hospital) cov-ering a wide Swedish geographic area. The nurses hadall experienced caring for potential organ donors thatdid or did not result in donation. The interviews lasted50—70 minutes.

2. The second step comprised the focused selection, whichwas necessary since we wished to have a clear under-standing of a well organised after death caring process.Here the participants were selected as indicated by theinitial re-analysis of the interviews in step one. These teninterviews revealed how participants themselves were apart of the emerging phenomenon. The informants were

recruited from three general ICUs located in two differ-ent regional hospitals (n = 8) and one university hospital(n = 2), and were interviewed during 2013. They all hadcared for a minimum of two donors (range 2—15 donors).

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. The third and final step was the theoretical group inter-views which we used to expand on and to verify theemerging model. When conducting theoretical groupinterviews, participants are recalled in small groups,introduced to the preliminary findings, and subsequentlyasked to discuss and to provide further examples ofthe findings. Their insights were used to modify andsaturate the emerging model. In order to secure satura-tion we finally invited four more informants during 2013from a university hospital with a large transplant unitby performing a focus group interview which lasted for90 minutes. The focus group involved two nurses from ageneral large ICU and two from a Neuro Intensive CareUnit (NICU). The latter also guided the analysis process.

In a total 29 informants, 26 females and 3 males whoould verbally share their experiences in the Swedish lan-uage participated in the study. Fifteen of them werenterviewed between 2006 and 2010 and the others (n = 14)uring 2013. All informants were recruited by an inquiryrom the nurse manager of each ICU and they were allowedo decide the time and place for the interview. After writ-en consent had been obtained all interviews took place in aoom at the hospital. The informants were included consec-tively as a consequence of adopting a point of departure.

ata collection

he open-ended interviews were digitally recorded and tran-cribed verbatim. Thoughts, emotions and actions during therocess of after death care were recalled during the inter-iews. The open-ended questions enabled the informantso more vividly relate memories of the after death caringrocess and elaborate on their experiences.

ata analysis

irst we conducted an initial literature review as recom-ended by Hallberg (2010) and Glaser (2010) to establishhether previous studies with a grounded theory approachad been performed with this particular focus. No such stud-es were found. We performed initial coding line by lineo find words or phrases indicating important categories,ualities or contexts related to the research questions. Forxample, a possible main concern could be coded as; main-aining the dignity of the deceased, while strategies forealing with the situation could be coded as from caringor a patient to caring for a dead body. Together with thenitial coding, memos were made including questions andhoughts that emerged during the analysis and coding pro-esses. These memos were recorded for each interview.

In the second step we conducted focused coding in ordero detect and explain the most frequent and significantodes. This phase highlighted the main concern experiencedy the informants. Simultaneously, the constant compara-ive method (CCM) (Charmaz, 2010) involving comparisonsetween: data—data, data—category, category—category

nd category—theory was used. The purpose of the methods to distinctly highlight and specify the mutual relationshipetween the various codes developed during the focusedoding. We also wished to clarify the context and specific

278 A. Forsberg et al.

Table 1 Selection and informants, gender, age and ICU work experience.

Selection process n Age ICU work experience (years)

First selectionPoint ofdeparture

15 (1 male) 36—65 3—32

Second selectionFocusedselection

10 (2 male) 31—55 5—23

Third selectionTheoretical

4 (1 male) 30—58 1.5—16

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ircumstances under which the informants experiencedfter death care. Finally, the process of change and the waysf dealing with it were identified.

indings

he analysis resulted in a process of after death care coveredy four categories. These were: safeguarding the dignity ofhe deceased person; respecting the relatives; dignified andespectful care; enabling a dignified farewell, all of whichontained several sub-categories. The process over timend between the above-mentioned categories was anchoredn the participants’ intense focus on the core category,chieving a basis for organ donation through dignified andespectful care of the deceased person and the close rela-ives. See Fig. 1 for an overview of the results. The coreategory was generated by means of a theoretical bridgedentified over time and between the conceptual categories.he concept of piloting was found to be the theoreticalridge where every action taken during the process of aftereath care was induced by a strong wish to pilot the relativesf the deceased. The informants dealt with the relativesery sympathetically whilst at the same time, preservinghe viability of the organs until the actual donation couldake place. Post mortem, close contact with the relativesas maintained until final debriefing of the relatives wasompleted.

The core category was related to the four main cat-gories which highlight the chief concern in the varioushases before and after organ donation. The core cate-ory contains all the informants’ descriptions of the processreceding the final farewell of the cold body. Dignity andespect was emphasised more or less by all informants ashe core aspects of after death care. The basic driving forcen the process seemed to be the wish for piloting the rela-ives through their shock and grief to a state of acceptancend hope, experiencing a sense of meaning in an otherwiseevastating and senseless situation. Knowing that severaleverely ill people could benefit from an organ donationnspired the ICU-nurses to do their utmost when preservinghe viability of the deceased’s organs.

I:1 ‘‘One has to retain respect for the patient. That’swhat I think is important. It’s about everything really,care, integrity and how we behave in the patient’s room.It’s how we look out for each other in these situations

and accept that this is something special. Dealing withthe relatives has to be conducted in a respectful manner,especially when trying to ascertain the patient’s will inall this, and then getting the relatives on board so thatthey understand exactly what is going on. But respect forthe patient is, I think, most important of all’’.

There were two parallel and main strategies through thehole process of ADC. The first was to actively and atten-

ively concentrate on preserving the viability of the organso enable organ donation and the possibility for a healthy lifeor several severely ill persons. The second strategy involvedn intense, sympathetic and respectful conversation withhe relatives in order to obtain consent for organ dona-ion whilst allowing them to continue their grieving process.ach category contains sub-categories that illustrate howhe informants dealt with after death care during the pro-ess. These sub-categories vary, partly depending on if theocus is on the deceased, the relatives or the professionalsnvolved, as presented in Fig. 1. In the following, the sub-ategories will be presented in bold Italics. The quotes areoded with figures representing statements from differentnformants in the focused selection.

afeguarding the dignity of the deceased person

hen the patient is identified as a potential organ donor,he body is kept on ventilator until the donation operations performed. Then the caring actions shift from taperingown medical treatment to intense actions to preserve via-ility of the organs. Before this shift takes place there haseen a struggle to save the patient’s life even if it is realisedhat the efforts are futile. Now this state is turned intontense activity aimed at preserving the organs to enablergan donation. Another clear shift now occurs from car-ng for a patient to caring for a body. This shift is vital forhe professionals involved mainly to make it clear for theelatives that their loved one is now deceased. To empha-ise this, the staff begin to act differently and change frompeaking to a patient to speaking about a person in the pastense.

I:3 ‘‘We try, as far as we can, to talk about the patient. We

do not use the patient’s name but rather talk about (thepatient). This is done in part to help the relatives under-stand that their loved one is no longer with us. We haveto help them come to terms with this because it’s not

The core of after death care in relation to organ donation 279

Safeguarding the dignity of the deceased person

From tapering down -medical treatment to intense ac�ons to preserve viability of the organs

From caring for a pa�ent to -caring for a body-From speaking to a pa�ent to speaking about a person in

past tensetheEstablish a calm and -

dignified atmosphere in the room

Enabling one nurse to focus -only on the deceased

Respec�ng the rela�ves

Provide �me for decision-making before obtaining consent for organ dona�on

Respect the will and -decision of the rela�ves

From standing by to ac�vely -informing, clarifying and facilita�ng the rela�ves’ understanding

From simply biding their -�me to ac�vely suppor�ng, comfor�ng and consoling.

Dignified and respec�ul care

Demand and ensure -appropriate and dignified behaviour from all professionals involved

Recognise the emo�onal -strain among the professionals

Encourage the ICU-staff to -say their farewells before the dona�on opera�on

Invite the nurses in the -theatre to find out more about the deceased before dona�on.

Enabling a dignified farewell

From bustling ac�vity -to peace and tranquillity-From dealing with a “warm body” to preparing a corpse-Environment changes from one of high technology to one of candles and flowers-Promote the transi�on of the rela�ves’ feelings from enduring to grieving-Par�cipate in a post procedure conference-Invite the rela�ves to follow-up services

THE

DONATION

ACHIEVING A BASIS FOR ORGAN DONATIONTHROUGH DIGNIFIED AND RESPECTFUL CARE OF THE

DECEASED PERSON AND THE CLOSE RELATIVES

THE CORE

Figure 1 This figure stems from interviews with 29 intensive and critical care nurses illustrating the process of after deathcare covered by four phases, where the first three work simultaneously and yet can be separated, as illustrated by this figure:safeguarding the dignity of the diseased person, respecting the relatives, dignified and respectful care and enabling a dignifiedfarewell. Each category contains several sub-categories illustrating how ICU-nurses deal with the main task. The process betweenthe above-mentioned categories was anchored in the participants’ intense focus on the core category achieving a basis for organdonation through dignified and respectful care of the deceased person and the close relatives. After death care (ADC) starts withthe notification of a possibly brain dead patient and is followed by various examinations in order to establish the declaration ofbrain death. At this point there is a change in the nurses’ perspective and approach, from a patient to a deceased person i.e.a dead person’s warm body. This initial phase is labelled the ‘‘warm death’’ to grasp the condition of a dead person still warmand circulated by mechanical ventilation. ADC lasts during the warm death while intensely preserving the viability of the organs,

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here labelled the ‘‘cold death’’.

easy for them when they can see their loved one is stillbreathing, has blood pressure, has a normal complexionand is still warm to touch’’.

In order to safeguard the dignity of the deceased, nursestry to establish a calm and dignified atmosphere in theroom. Also organisational efforts are made so preserve thedignity of the potential organ donor by enabling one nurseto focus only on the deceased.

I:7 ‘‘Of course, you’re talking much quieter than you nor-mally do and you move around the area calmly and withcare. You have the feeling that you don’t want even the

phone to ring. So, as far as I am concerned, it definitelyfeels as if something of major significance has occurredand you almost do not want to talk to each other becausethere’s a dead body lying there’’.

elatives’ and professionals’ last farewell to the now cold body,

especting the relatives

n important step was to approach relatives in a kind andympathetic manner and provide time for decision-makingefore obtaining consent for organ donation.

Regardless of what the relatives decided it was clearlymportant to respect the will and decision of the relatives.

I:6 ‘‘We usually start by asking the relative after thepatient is diagnosed as brain dead if they have any ideawhat the patient thought about the idea of organ dona-tion. They tend to be very sad and cry and need sometime on their own. Sometimes we will sit with them fora little while and sometimes they just want to be left

alone in peace, which usually means there will not be aquick decision. Now and again, a relative will be abso-lutely sure, but most want time to think about it. I thinkthat ‘‘no’’ is not necessarily in their minds. I do not want

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to influence them one way or another because I’m afraidthey may later regret their decision and will be unhappyabout my behaviour. I want it to be their decision andregardless of what they decide, my thoughts must neverplay any part in their decision making’’.

When the conversation with the relatives in order tobtain consent is conducted there is a shift from standing byo actively informing, clarifying and facilitating the rela-ives’ understanding. The ICU-nurses’ approach becomesore intense from simply biding their time to actively sup-orting, comforting and consoling.

I:2‘‘We are probably moved by the solemnity of the occa-sion yet remain focused. We are very careful to remainprofessional and project a feeling of security for them.For me, what is important is that they understand whywe have to do this. As far as I am concerned it is veryimportant that they understand why we have to do this.I do not want them to feel cheated later on’’.

ignified and respectful care

here were a number of deliberate actions taken to ensure dignified and respectful care. One distinct way was toemand and ensure appropriate and dignified behaviourrom all professionals involved from the radiology depart-ent to the operating room.

I:1‘‘Sometimes you have to go to radiology for an angiog-raphy. Every now and then they have a commercial radioon through speakers in the room. You have perhaps beenworking with your patient for a whole afternoon or per-haps been comforting the relatives and you hear thatoverpowering music and you ask them to turn that radiooff; but they have no idea what it’s all about’’.

It was also important to recognise the emotional strainmong the professionals as they attempt to maintain a dig-ified atmosphere throughout the whole donation process.

way to acknowledge that the proceedings might be expe-ienced as a loss also for the professionals was to encouragehe ICU-staff to say their farewells before the donationperation. This concern also involved the operating teamy inviting the nurses in theatre to find out more about theeceased before donation.

I:1 ‘‘So, before the donor surgery we ask the surgi-cal team to come to the ICU and yes,. . .just enter thepatient’s room where they sometimes might meet therelatives. Whilst they are there, we take the opportunityto discuss last minute practical details and we brief themabout the patient. Once that’s done, all that’s left is tofollow them and the patient into the operating room’’.

nabling a dignified farewell

he final phase of the after death caring process beginsfter the donation operation. Now there is a clear change

f pace from bustling activity to peace and tranquillity.he deceased is returned from the operating room, cold andale. The nurses now move from dealing with a warm bodyo preparing a corpse for a final farewell by the relatives

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nd the environment changes from one of high technologyo one of candles and flowers.

I:4 ‘‘After that, we do like we always do. We have a pall tocover the corpse and we light candles. It is very impor-tant that the relatives come in at this time, and sinceit is clearly a difficult time for them, a quiet, dignifiedfarewell is important’’.

Now there is a need for the relatives to move from shocknd utter despair to fully grasp the fact that their lovedne is no longer alive and the ICU-nurses must now attempto promote the transition of the relatives’ feelings fromnduring to grieving. To enable personal closure, ICU-nursesarticipate in a post-procedure conference. To facilitatelosure for the relatives, the nurses invite the relatives toollow-up services a couple of weeks after the death of theiroved one.

iscussion

ethodological considerations

e chose GT with a constructive approach in order to gain deeper understanding of the issues from the perspectivef the informants. The study was performed in line withhe four criteria of good quality in GT-research described byharmaz (2010) i.e. originality, trustworthiness, resonancend usefulness. The collection of data was done throughritten memoranda, digital recordings and verbatim tran-

cription and took several years to assemble, but in twoequences. Most of the data was new and collected during013. We tried to ensure credibility by judging and criticis-ng the interview guide independently of each other whiletill in a research team. Also, fifteen interviews were re-nalysed, scrutinised and discussed by the researchers inrder to ensure a relevant focused selection. The value ofhe data selected was strengthened because all the infor-ants were recruited from nine different ICUs in various

eographical areas of Sweden.The grounded theory: achieving a basis for organ dona-

ion through dignified and respectful care of the deceasederson and the close relatives, has generated a new under-tanding of the process that takes place following thedentification of a potential organ donor until the finalarewell by the relatives at the time of ‘‘cold’’ death. Theain categories constitute new condensed concepts on how

he informants master the process of after death care. Theocial implication of this theory is a more specific under-tanding of nursing procedures up to the time the donation isarried out and the relatives have had their follow-up meet-ng in the ICU. This understanding needs to establish notnly that the ICU-nurses do their utmost to achieve organonation, but they also safeguard the will and wishes ofhe relatives. This study enhances what we had already pre-icted about after death care. However, it also goes onetep further by clearly identifying the main concern duringhe process of after death care and how ICU-nurses master

hat concern.

During data collection and data analysis, theoreticalverload was clearly evident after 25 interviews. By thend of the analysis process, the subcategories and the main

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categories confirmed the analysis rather than adding anynew data. Nevertheless, we wished to ensure overload byperforming a focus group interview, mostly to confirm thecategories further. Quotations from the informants supportthe principle that the theory stems from the coding processand we have continuously checked developed concepts, aswell as the theory against the data in order to confirm andoptimise the result. We consider the theory to be relevantfirstly to the informants included in this study and secondlyto those ICU-nurses worldwide that recognise themselves inthe core category and its process. The grounded theory ofthis study might be applicable within the area of ICU-nursingafter further testing.

Discussion of the findings

The most important findings in this study were the obviousdedication among the informants to safeguard the dignityof the deceased. This dedication was permeated by theutmost professionalism and high motivation for the missionto enable organ donation, as evidenced by their caring butactive support of the close relatives and their adjustmentof the environment to create a peaceful atmosphere. Theway in which the informants described the atmosphere inthe patient room immediately after the confirmation of thepatient’s death (the ‘‘warm’’ death) can be compared with avigil for the deceased. The ambience was described as veryspecial, filled with respect for the dead person and theirwillingness to donate their organs.

Respect and dignity are the two major componentswhich constitute nursing care and make up the caringfundamental from which the nurse approaches the dyingpatient, the family members and the donation process.The aim of the process was to reach a successful con-clusion, regardless of whether the donation took place ornot.

The informants required an ethical approach from otherhealth care staff e.g. at the radiology department, which weinterpret as strong and clear evidence of promoting appro-priate behaviour to ensure dignity in the situation. They alsoinvited the theatre staff to learn more about the deceasedbefore the donor operation was performed in order to ensurethat an ethical approach was maintained throughout theprocess.

In line with earlier studies of end-of-life (Flodén andForsberg, 2009; Pearson et al., 2001) serious efforts weremade to support the family members through the pro-cess, from the moment they were informed that theirloved one will not survive until making arrangements fora dignified farewell. This piloting, i.e. taking the lead bydirecting the sequence of events was the theoretical linkbetween the categories and illustrates a more resolute wayof behaviour applied by the nurses, rather than other sim-ilar concepts e.g. support or guidance. This metaphor ofpiloting was also used in an earlier study concerning theexperiences of close relatives with end-of-life care (Fridhet al., 2009b).

Sandelowski (2002) claims that contemporary nursing hasmoved away from the Cartesian thesis of separating bodyfrom mind and that ‘‘embodiment’’ can be a potentialframework and explanation for the origin of nursing. By

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ncorporating the phenomenological understanding of theody and referring to the work of Lawler, she argues thaturses ‘‘have turned their attention to the ‘‘lived body’’s they increasingly adopted a more integrated and lessragmented conceptions of the body in relation to self’’Sandelowski, 2002) p 61.

This way of seeing the patient’s body as imbedded in theerson becomes a challenge for intensive care nurses whenealing with the potential organ donor. This is probably notecognised by the medical profession, who rarely partici-ate in end of life care or in the care of organ donors’ bodiesOröy et al., 2011; Sorensen and Iedema, 2007). The paradoxf taking care of a dead body which has every sign of beinglive is described in the literature (Galvin, 2010; Monforte-oyo and Roque, 2012). Furthermore, beyond the personal,xistential challenge of caring for a dead patient, the nurselso has to face the shocked and grieving family members.o simultaneously take care of a potential organ donor, a dis-ressed family as well as manage the donation process placesreat demands on the nurse (Flodén and Forsberg, 2009;earson et al., 2001). The informants in this study man-ged this by organisational support from a Donor Responsibleurse (DRN), by paying close attention to each other’smotional strain during the process and by a strong, per-onal belief that preserving the dignity of the donor isheir main mission. By adopting behaviour that adheres totrong organ donor advocacy, they fulfil their professionalesponsibility, which seems to create a type of professionalride.

Using the terminology ‘‘warm death’’ and ‘‘cold death’’bviously enabled the informants to clarify the situation forhe relatives in order to avoid any misunderstanding abouthether the loved one is dead or not. To facilitate the griev-

ng process, the informants emphasised the importance of aast farewell after the donation, in the ‘‘cold death’’ state.he nurses strived to make it a dignified moment for the fam-

ly members to remember. Furthermore, they participatedn follow-up services, where bereaved families returned tohe hospital for a meeting with the ICU staff. The value ofuch follow-up has proved to be of great importance for fam-ly members (Engström et al., 2008; Fridh et al., 2009b). Buturses also recognised the value of these meetings in thathey offer an opportunity to say a final goodbye to the rela-ives and to receive feedback on the care provided, whichan lead to an improvement in the quality of end of lifeare (Fridh et al., 2009a). Participating in a post proce-ure conference for the staff involved also provided qualityssurance of the after death caring process.

Earlier studies revealed (Flodén et al., 2011) that nurseseport lack of support from superiors when working withrain dead patients and organ donors. Incidentally, thisituation is changing. The political demand for excellentrgan preservation has led to major pressure on hospitals toncrease the number of donations, which in turn has high-ighted the need to support the bed-side professionals.

We argue that the process of after death care identifiedor the first time in this study is a generic process trans-erable to many ICU-contexts outside Sweden. Hopefully,

he core of after death care as outlined in this paper canontribute to both evidence-based nursing praxis and to the-retical development in this narrow but highly importanteld.

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onclusion

rom the data, we have finally concluded the definition ofhe concept of after death care as follows: After death careeans intense, technical, medical and nursing interventionsrovided to enable organ donation from a deceased person.t is managed by extensive nursing efforts to preserve andafeguard the dignity of and respect for the deceased personnd the close relatives by taking the lead and directing thehole process in an atmosphere of peace and tranquillity.his study constitutes the first step in developing a nursingheory of after death care in relation to organ donation.

efinitions. The concept of potential organ donor is usedo denote patients who are declared dead due to braineath, treated by means of a ventilator in an ICU andre considered medically suitable to become an organonor, but where the decision about OD has not yet beenade (The Swedish Council for organ and tissue donation,

010).

cknowledgements

his study was performed within the Swedish nursingesearch network in organ donation and organ trans-lantation. We acknowledge with thanks funding supportrom Swedish Research Council for Help, Working Life andelfare. The authors are grateful to the following nurse spe-

ialists in intensive care: Annie Hållander, Mashid Nadafannd Markus Saarijärvi, for valuable assistance in the collec-ion of data.

The authors are grateful to Joseph Clark for languageeview.

Conflict of interestThe authors have no conflict of interest to declare.

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