Health-care Professional Decision-Making in Neonatal Resuscitation at the Extremes of Prematurity
a) Résumé of the project
Background
Advancements in perinatal medicine and neonatal intensive care have resulted in the capacity to intervene in the survival of infants at the extremes of prematurity. Although medical advances have increased the survival rates of extremely premature infants, they have had little impact on decreasing the complications associated with delivery at such early gestations. As a result, ethical dilemmas and moral distress associated with defining which infants are viable for resuscitation are evident in clinical practice.
In medicine, ethical dilemmas often emerge when there is uncertainty about what the future holds. Uncertainty is common in decision-making with neonatal resuscitation because the long term outcomes of an infant’s health are not known at the time a decision is made on whether to resuscitate or not. While some infants grow up to lead productive and fulfilling lives, others may suffer from a range of mild to severe physical and mental deficiencies. Uncertainty in outcomes can affect the ability for parents to make an informed choice and health-care professionals (HCPs) ability to enable an informed decision, yet a decision needs to be made.
Objectives
The purpose of this research project was: (i) to explore the importance of various ethical issues for HCPs directly and indirectly involved in neonatal resuscitation decision-making and, (ii) through the use of grounded theory, develop a theoretical framework that illuminates the resuscitation decision-making process of extremely premature infants.
Methodology
A qualitative methodology named grounded theory was selected as it enables the researchers to capture the experience of decision-making directly from the participants in the clinical setting where decisions are made. Grounded theory is effective in generating a substantive model of a social process.
Four high-risk obstetricians, one obstetrician, five neonatologists, four resuscitation team nurses, and one advanced practice nurse participated in a one-on-one interview, 45-75 minutes in length. Five respiratory therapists, three social workers, seven neonatal nurses, five antenatal nurses, two nutritionists, two developmental follow up clinic nurses, and one physiotherapist participated in one of seven focus groups, 60-90 minutes in length. In-depth open ended semi-structured interviews and focus groups explored participants’ perceptions and experiences about decision-making.
Transcripts of the interviews and focus groups were read and organized into open, axial and selective coding. In open coding, the data is read and fractured by identifying segments of data that relate to a theme or idea. Subsequently, transcripts were axial coded, where similar themes were organized into conceptual categories and were then compared to generate key themes. Finally, to reach a further level of abstraction towards generating a theory, selective coding identified a core concept that is a central theme of the study.
Results
Family-focused relational decision-making model in neonatal resuscitation
As members of a multidisciplinary health-care team involved in resuscitation decision-making, HCPs firstly manage their own biases and expectations through self-reflection. Secondly, to work as team, HCPs arrive at a mutual understanding of each other’s biases and expectations, through ongoing communication and collaboration. When entering into a therapeutic relationship with high risk obstetrical patients and their partners (parents), HCPs manage the expectations that parents bring to neonatal resuscitation.
Parents enter into the decision-making setting with their own biases and an individually unique experience of pregnancy. For parents where premature birth is imminent, a mutual understanding and common ground is established with the multidisciplinary health-care team.
In order for decision-making to proceed effectively, a relational space is co-created by HCPs and parents through sharing and interchange of information. Establishing a relational space enables the HCP to focus on defining what the parents consider 'a good outcome' for themselves and their infant and, if effective, creates an openness that enables their medical expertise to be accepted in guiding parents towards an individualized plan-of-care.
Guidance is offered throughout the relational process in order to help the parents reach an informed choice about a resuscitation plan-of-care, while navigating through hope, uncertainties, and guilt associated with life and death decisions. The direction of guidance in the decision-making process is focused on the family, and their desired outcome.
Figure 1. Family-focused relational decision-making model (Please see attached file)
b) What new knowledge was created by your project and how did a transdisciplinary approach improve the understanding of your subject?
The knowledge generated from this study provided new insights into how decisions are made in neonatal resuscitation. Other studies on neonatal resuscitation decision making present a ‘neutral information model’, where parents are encouraged to make their own decision or an assent model, where HCPs provide an assessment and recommendation, and allow parents to either agree or disagree, or an ‘expertise’ model, where HCPs are seen as having neutral and unbiased information and expertise.
Rather, in this study, HCPs wished to maintain patient autonomy and avoid paternalistic advice, which they believed could be too imposing and irrespective of the parents’ life context and values. Rather, HCPs saw their role as occupying a fine balance in between the two positions, where guidance is offered to parents towards an outcome that is consistent with the parental goals and values. The family-focused component of the decision-making model ensures that the goals and values of the parents (the family) are central to any decision that is made in a resuscitation plan-of-care.
By taking a transdisciplinary approach which utilized the background of obstetrics, neonatology, nursing, and ethics, a clearer understanding of the dynamic process of decision-making resulted in a fully encompassing decision-making model. Because decision-making in neonatal resuscitation relies on each respective discipline, having a transdisciplinary approach enabled for a more robust understanding of the complexities of decision-making.
c) What challenges remain to be addressed?
Perhaps most importantly, studies need to focus on the parents’ perspective in resuscitation decision-making. Further investigation is needed to understand the decision-making process from the parental perspective as well as asses the applicability of these findings. Very few studies have captured their perspectives, which is an essential component to generating a truly encompassing decision-making model in the resuscitation of extremely premature infants.
d) How do you plan to transfer knowledge gained in your project to the concerned communities.
In order to transfer knowledge gained in the project, findings will be submitted to journals that are deemed relevant to neonatal-perinatal health-care. To reach HCPs, promoting self-reflection and integration of disciplines in solving ethical dilemmas in health-care will be presented to medical educators. To reach parents, a knowledge transfer strategy may be employed to decrease moral distress in ethical decision-making.
It will also be explored as to how the research findings can be made accessible to the public through a narrative for public viewing.
e) Indicate two questions that you would like other trainees to address.
1.) Would it make it easier for HCPs in decision-making if parents were better prepared for the threat of pre-term birth? If so, how do you propose they should be informed?
2.) What complications do you see arising in maintaining a single approach to assisting parents in decision-making from a multidisciplinary health-care team approach? How can these be overcome?
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Hello Mark, thank you for
Hello Mark,
thank you for your presentation.
Could you provide an example scenario of how the family-focused relational decision-making model would be applied in practice?
What real choice options do parents face in light of a possible pre-term birth in Canada? How is influenced by the timeliness of diagnosis and prognosis?
> 1.) Would it make it easier for HCPs in decision-making if parents were better prepared for the threat of pre-term birth?
> If so, how do you propose they should be informed?
I still every once in a while see pregnant women smoking and it shocks me that such ignorance (I hope it is 'just' ignorance) still exists in our society. Obviously, more needs to be done at the level of primary prevention of pre-term birth risk factors through public health campaigns.
Secondary prophylaxis probably needs to take into account various parental cultural backgrounds and belief systems.
HCP-guided self-help groups prove useful I believe in dealing with life events and choices they entail.
> 2.) What complications do you see arising in maintaining a single approach to assisting parents in decision-making from a multidisciplinary health-care team approach?
I think the challenge is to find a uniform layman language and send congruent, non-conflicting messages to the parents.
>How can these be overcome?
Your model provides a framework for this by suggesting that a combination of 'neutral and unbiased information and expertise' with settling of personal and interpersonal beliefs among the HCPs must precede contact with parents.
This all sounds logical and obvious, yet I could imagine that in reality lack of time and difficulties in information flow between the HCPs involved may be a challenge that needs to be addressed on the regular basis. I think specialized social workers can be very good intermediaries in this.
All the best,
Martin
Thanks for your comments
Thanks for your comments Martin.
First, let me respond to your answering of my posed questions.
Certainly, increasing the 'level of primary prevention of pre-term birth risk factors through public health campaigns' as you mentioned, would be a good way to avoid those premature births due to specifically linked contributing behaviours. A recent study also linked any caffiene consumption to increased risk of prematurity. The real struggle is to better prepare parents who have no indicators that premature birth is likely.
Also, having a system that 'takes into account various parental cultural backgrounds and belief systems' is a crucial step towards helping inform parents and work with them towards a mutually agreeable decision.
The second question of maintaining consistency also highlights the need to bring all key informants onto the same page. As you suggest, 'finding a uniform layman language' would go far to ensure decisions made are contributed to by all. The reality of time constraints certainly complicate matters, however, as the multidisciplinary HCP team continues to interact before, during, and after resuscitation decisions, they are in the most opportune position to improve their communication so as to set the stage for a consistent approach once parents enter the realm of prematurity and associated resuscitation decision-making. I agree with you in saying that perhaps a specialized social worker would be able to assist in facilitating this interaction.
To answer your questions:
Could you provide an example scenario of how the family-focused relational decision-making model would be applied in practice?
- Ideally, this decision-making model could pertain to all instances of premature birth, so as to ensure that HCPs are effectively managing their self-expectations, their colleagues expectations, and parents expectations, as well as co-creating a relational space with parents (which leads to an informed resuscitation decision). The purpose of this model is to hilight places in resuscitation decision-making where interventions could decrease moral distress in the decision-making process rather than point to specific scenarios which might pose challenging. Rather, all scenarios are associated with the need to apply the model in practice.
What real choice options do parents face in light of a possible pre-term birth in Canada? How is influenced by the timeliness of diagnosis and prognosis?
- Below 22 weeks gestation, infant resuscitation is nearly never offered by HCPs to parents as an option. After 25 weeks, infant resuscitation HCPs nearly always resuscitate. It is mostly inbetween these two gestations where parents are the ones who truly have the choice to go ahead or opt to not resuscitate their extremely prematurely born infant, depending on what they value and desire as an outcome. However, because before birth a child may be seen as 'hypothetical', but once it is born it is 'real', often times decisions are made (especially when time is too short to receive or understand full diagnosis and prognosis) to initiate resuscitation. This is considered to be a 'trial of life' to better assess the infant's likelihood of survival and morbidity. However, the decision from initiating resuscitation has now shifted to an also difficult decision of maintaining or switching to palliative care.
Thanks again for your comments and questions,
Mark
Thank you Mark. As I was
Thank you Mark.
As I was reading your answers I began wondering to what extent health insurance / financial pressure is playing a role in the decision making process. I guess this is another aspect to consider as it may impact on both HCPs and parents. Are there perhaps structures in place to unbind such dependencies?
Again thank you for your thought provoking work and all the answers,
Martin
Thanks for your comment on
Thanks for your comment on health insurance/financial pressures Martin.
Certainly these pressures may play into how parents deem themselves fit to care for a child. Unfortunately my study did not look specifically at parents, so I may not be best to comment on these pressures, apart from what I have seen in the literature.
As for HCPs perceptions of parents ability to financially provide for an infant that may have mental of physical deficiencies, certainly this is part of what HCPs discussed as a bias, however, most discussed the need to remember that their role is not to counsel parents based on what they themselves would want for a child (because most likely their values may differ), but to remember that it is the parents who are the 'focus' of the decision-making process.
In trying to unbind these dependencies, managing self-expectations was the first important step for HCPs to be able to enter into the decision-making process - meaning that they need to come to terms with their biases as best they can before entering into a relationship with initially their colleagues, and most importantly their clients - the parents. If this step is not undertaken, or only is only partially explored, HCPs may be more likely to experience moral distress in not agreeing with parents who may still wish to resuscitate an infant for a financially strained family who may hold the view of a strong sanctity of life. HCPs may be able to help parents better explore the understanding of what financial burdens may be placed on parents if a child may be fully dependent, but this should not mean that HCPs are being directive in their counseling and irrespective of parental values in ultimately being the deciding factor.
Thanks again,
Mark
Jo Watson RN, MScN,
Jo Watson RN, MScN, ACNP
Director, Obstetrics and Gynaecology
Sunnybrook Health Sciences Centre
Hi Mark
Thank you for your thought provoking discussion of the importance of ethical issues for HCPs involved in neonatal resuscitation decision-making. For HCPs to begin counseling parents from a perspective of protecting family automony is important. I see the challenge being when parents do not know what their goals are and yet they are faced with a decision for which the outcome cannot be known.
I think you have set the stage for a program of research building on your model that includes not only parents' perspectives at the time of delivery but explores their perceptions years later.
As for your questions:
Would it make it easier for HCPs in decision-making if parents were better prepared for the threat of pre-term birth? If so, how do you propose they should be informed?
The incidence of preterm birth is low, so preparing every pregnant woman is probably not the best approach. When preterm birth is likely, then preparation can be undertaken by the HCPS with the hope that there is adequate time for families to identify their goals and recognize their values. Close consultation with neonatologists has been a key piece of the care families on our high risk unit receive. Families have been known to change their thinking and their wishes over time and particularly at the time of birth. Do we need to know more about how HCPs manage these kinds of situations?
2.) What complications do you see arising in maintaining a single approach to assisting parents in decision-making from a multidisciplinary health-care team approach? How can these be overcome?
I think that believing that there is one right approach may limit our practice. MOdels should provide guidance rather than be perscriptive.
Jo
Thanks for your comments
Thanks for your comments Jo.
You are absolutely right that the overwhelming challenge in the resuscitation of infants at the extremes of prematurity is when parents do not know what their goals are and yet they are faced with a decision for which the outcome cannot be known. Uncertainty is perhaps the biggest hurdle to making an informed decision; thus impeding the ability to maintain autonomy.
What is hoped is that HCPs can engage parents so as to elicit their values and help to guide parents to an outcome that is desirable for those culturally and socially unique parents. For example - a woman of advanced maternal age who has no children and tried multiple times with multiple assisted reproductive therapies may have significantly different values in desiring a child of any mental or physical ability than a younger professional working woman who has unexpectedly become pregnant and may not desire children for the short term future so as to focus on career goals. Obviously these two women have very different values at the moment, and counseling a resuscitation decision must take these values into consideration.
Thanks again,
Mark
Hello Mark I’ve read your
Hello Mark
I’ve read your presentation with great interest. Presently, I’m taking part of the same kind of discussion at our university. Personally, I have a real problem with proposition to resuscitate a child between 22 and 25 weeks. Do you know statistics about a percentage of children being “normal” after?
Eva
Hi Eva, Thanks for your
Hi Eva,
Thanks for your question.
From the literature that I have read, survival rates at 22 weeks are below 10%, 23 weeks gestation rest at 20-30%, which increases to 40-50% at 24 weeks (Hussain and Rosenkrantz, 2003; El-Metwally et al., 2000). As for morbidity, it is difficult to nail down exactly what is universally considered to be 'normal', as severe issues include neurodevelopmental issues which range from mental retardation, cognitive delays, cerebral palsy to blindness, and deafness. More minor problems may include motor problems, specific learning disorders and attention deficits. As you most likely know, infants of lower gestational age were more likely to have more adverse outcomes than were more mature infants.
For some statistics on morbidity it is difficult to come across universally accepted figures of percentages of children born at the extremes of viability being 'normal' after resuscitation. One article which may be of use is the - Management of the woman with threatened birth of an infant of extremely low gestational age - a joint statement from the Society of Obstetricians and Gynaecologists of Canada and the Canadian Pediatric Society (http://www.cps.ca/english/statements/FN/fn94-01.htm)
Best wishes and good luck with your work. Please feel free to contact me if you have any questions or I can be of assistance.
Mark
Quite interesting and
Quite interesting and brilliantly presented!
Your model Mark allows HCP expectations, parents expectations and may be others expectations to be taken into account. Reading your presentation and your comments it seems to me that although the application of your model will result in a better informed decision and may be in a decreased moral distress for the parents who are confronted to a difficult choice, the final decision will be based on the parents’ values, their desire to get a baby, and their definition of a good outcome for themselves and for the baby.
In this process the autonomy of the parents is well respected. This raised three questions:
1) I understand and agree that the role of HCP is not to “counsel parents based on what they themselves would want for a child” but having said that, what should be the HCP’ role when he knows that a baby will come out handicapped, disabled and when the parents still want a resuscitation? Could you comment on the possible opposition between the HCP responsibility and the respect of autonomy? Would it be possible that under some specific circumstances the HCP responsibility should prevail over the respect of the parents’ autonomy?
2) What is the opinion of the parents who have decided to resuscitate an extremely premature baby years after the decision was taken? Any study on that?
3) Autonomy seems to me a great ethical principle. When apply to the directly concerned person it allows her or him to decide for herself or himself ideally without any constrains. An application of this principle is I believe the informed consent which must be signed by anyone participating in a research project or having to receive an invasive treatment. In this matter everyone is equal. But I suspect some difficulties when the principle of autonomy is applied to a third party, such as in the present case. Since the parent decision regarding resuscitation may vary from one to another, even when the cases are identical, I must conclude that babies born alive are not born equal on ethical ground… What is ethics saying about that incongruity?
Again congratilation!
Ray
Thanks for your questions
Thanks for your questions and comments Ray,
You are right to talk about the desire to maintain parents autonomy, however, part of the challenge in doing so rests in the imperfect ability for parents to achieve an informed choice. Achieving an informed choice means that one must have some understanding of the possible consequences of a particular action will be. However, in resuscitation at the extremes of prematurity, there is little prognostic information that points to long term health of an infant.
As a result, HCPs try their best to reach a level where parents can make a choice, but the values of the parents come into play as a crucial factor. This is because say if the statistics provided indicate that an infant has a 20% chance of survival at 23 weeks and an 80% of neurodevelopmental issue, then parents can think to themselves "would I be ok with raising a child who might probably have a neurodevelopmental issue as these odds are indicating the likelihood of such an event".
To respond to your questions -
1) The role of the HCP is certainly challenging in resuscitation at the extremes of prematurity. Part of the struggle is that HCPs too have no knowledge of whether this particular infant will be handicapped or disabled. They are left to provide population statistics on mortality and morbidity, but are faced with the reality for THIS infant, being handicapped is either 0% or 100% (they either will have it or they wont). As for parents wanting to resuscitate, even when statistics are grim - HCPs can only really override parent autonomy when either the likelihood of sever disability is certain (below 22 weeks), or on the other hand, unlikely(after 26 weeks). In between these gestations, the direction that is taken is given to the parents.
2) While our study did not look at satisfaction of long-term outcomes, a very few number of studies have (Pinch & Spielman, 1990, 1996). Regrettably, some of the results indicate that views change in the long run about whether the correct decision was made. This hilights the difficulty in informing parents just how the quality of life of the child (and the rest of the family) may be affected at the time a decision is made. In other words, how can you every truly appreciate its impact until you live it?
3) I agree with you in that the principle of autonomy is essential to making decisions in health-care. However, what I find troubling is the situations (like resuscitation at the extremes of prematurity, or other life and death situations), where the long term outcome is not known. How is one to make an informed decision then? I find the work of Susan Sherwin on relational autonomy provides some answers (and of course a few questions) on how we should challenge the notion of autonomy while keeping in mind the benefits that it has brought us in being able to direct our own futures.
As for parents being the surrogate decision-makers, certainly, the infant is seen in the light of adopting the same values of the parents. While this ofcourse changes over one's lifetime, at the time of birth, a decision importantly incorporates what the parents value. While it is assumed that the infant will adopt the same values, who else, it is argued is in a better position to appreciate what this infant might want.
Thanks again for your insightful questions and comments!
Cheers,
Mark
HI Mark, I read with a lot
HI Mark, I read with a lot of interest your work. It seems very interesting.
Is this desicion-making process very similar in every neonatal unit across the country? Would there be a way of comparing different systems to evaluate outcomes?
I did not see listed the inclusion of psychologists in the HCP team. Considering this situation a highly stressful decision for the parents, maybe including a professional able to give support to them might help (perhaps not at the very moment of making the decision but previous or even after with the management of guilt, anxiety or fear.)
Regarding your questions about information to the parents:
I agree wiht Jo in that not every woman should be informed about the probability of extreme preterm birth, it would create a lot of unnecessary anxiety. I think the information should be both written and oral, some people are able to understand things very fast, some others need more time. I guess some statistics should be included in the information about what could and what could not happen to the baby in the future.
Thank you so much, kind regards, Pia
Hi Pia - thank you for your
Hi Pia - thank you for your questions and comments.
To answer your questions - no, decision-making is not necessarily similar across the country. Different NICUs face different issues (ie. resources, professional codes of practice). The Society of Obstetricians and Gynaecologists of Canada and the Canadian Pediatric Society only produce guidelines - not hard rules about the way of conducting practice. As for evaluating the outcomes, certainly regional data is collected in seeing the long term outcomes of infants. In fact, several centres are in the process of keeping better records on such information, but as of yet, there aren't so many indepth comparative studies. However, the first section of this research project (mine is only a part), is to gain a better perspective of the culture of practice across the NICUs in Canada to see how similar/different they are.
As for the inclusion of psychologists - which there may in fact be in other centres (but not in our centre) - social workers take some of the role of what you are talking about (especially for parents). Spiritual and pastoral care also exists, but it is not always utilized (especially if people aren't aware how the stresses of the perinatal-neonatal environment are affecting their psychological health). However, to support the difficult process for HCPs, there is little in the way of psychological support. This is one of the recommendations that we are in fact advocating for as a result of the study.
Better preparing women for the risk of premature birth is difficult, you're right. Certainly there are the essential messages - "to avoid harmful health behaviours while pregnant - which can lead to prematurity", but as much of premature birth occurs without warning (Gordon et al., 2007), it can be hard to better prepare all of these women (and their partners). Perhaps greater emphasis could be placed on prenatal care (literature and classes) during this delicate time of pregnancy.
Thanks again for your comments and questions!
Best wishes,
Mark
Hi Mark, thanks for the
Hi Mark, thanks for the answers. Evidently the technology is advancing fast and I wonder if there is, in parallel, an evolution of the health policies to support those kids in the future? Now I am curious, can you recommend me a good review on the outcome of the babies that were resucitated very prematurely?
I think you project will render very interesting information, congratulations, kind regards, Pia
Hi Mark and others, This has
Hi Mark and others,
This has been a very interesting discussion and is giving me a lot to think about.
A couple of thoughts and questions - feel free to choose to respond to some and not all of them:
1) Was the process of your research interdisciplinary in nature (i.e., did you design the study as part of a team)? If not, how do you think your study may have been different (i.e., the questions you asked, how you chose to study your topic)?
2) I know you interviewed a number of different disciplines for your research, did you notice any interesting differences among professions or were there too few people to really make those comparisons? I know these may be more quantitative questions, but I think it is an interesting avenue for research, as we come from different training models.
3) I think studying parents' perceptions of the decision-making process and outcome is a very interesting topic, and studying them pre-, post-, and years later would be highly informative. No doubt they may have different feelings depending on the stage of life they and their child are in and it would be interesting to chart this over time.
4) Given the results of your model, it seems imperative that teams have the time to meet together to process their expectations, discuss outcomes of cases, etc. This seems to be an important aspect of team functioning, but one that is hard to implement in a practical sense, partly perhaps because professionals cannot count this time as 'direct client service delivery' when they are accounting for thier time. It is something I've been thinking about lately and wonder how we can better incorporate this into our notions of what it means to provide transdisciplinary care.
5) I always find the question, "what is normal?" to be a hard one to answer. I think we are often faced with this in psychology - helping people adapt to difficult circumstances or conditions in which they feel different from others. I find it hard to know when abnormal is okay and is just part of the rich tapestry of life, so to speak, and when the burden of care for parents becomes too much. I see this as being at the root of your research topic and do not have any answers myself, although I probably lean more towards being more accepting of difficult outcomes. For this reason it makes sense to me that professionals and teams have to reflect on their own views of this, particularly as the research on outcome is still unclear.
6) As a psychologist, I am interested in hearing how part of the recommendations from your research is to advocate for psychological support for the HCPs. Do you think the psychologist should be part of the team and work at this level or shuold they provide individual support to HCPs? I could image different advantages and disadvantages for either scenario.
Thanks again for a wonderful presentation and great discussion from everyone.
Alex.
Hi Alex, Sorry for the delay
Hi Alex,
Sorry for the delay - I was away at a conference on Friday.
To reply to your questions and comments -
1) The process of my research was interdisciplinary in nature as it was carried out by myself (a graduate student in health and rehabilitation sciences - specialization of health-professional education), and my co-supervisors (one being a nurse and the other being a neonatologist). I think that these differences in perspectives and disciplines helped to strengthen the robustness of our work as it ensured that themes and concepts were well fleshed out and incorporated a variety of perspectives.
2) What I happened to notice about the variety in professions was that those who are directly involved in decision-making (the physicians and advanced nurse practitioners) had the perspective that everyone on the multidisciplinary team was involved in decision-making. This was because they saw decision-making as a PROCESS as opposed to as being made at a point in time. Those providing a supporting role (NICU/antenatal nurses, resp. therapists, social workers) saw decision-making as the latter and saw the physician/nurse practitioner as more likely to occupy a hierarchial structure. This result has very important implications towards how dynamics play out in a multidisciplinary approach, in needing to ensure that HCPs are more open with each other about their roles and expectations in providing care.
3) I absolutely agree - looking at parents perspectives (especially long term) would be a great study. I suggest looking at those two articles by Pinch and Spielman (referenced earlier) would provide you with some interesting findings on their experience, but think that more studies need to be done.
4) It is true, implementing an approach of facilitating dialogue could be seen as 'taking up too much time'. However, what I am arguing in favour of HCPs being more explicit with their roles and expectations in the time that they normally interact - which doesn't have to take up further time. What might take up further time is the debriefing sessions (which already happen at certain times - usually after a particularly challenging case). Most HCPs I talked to saw that using a short amount of time when difficult ethical dilemmas persist can reduce their moral distress and residue - which of course could impact care. I recognize that advocating for even a little time is one of those classical cases of arguing that "well, it would be nice", but the health-care system is stretched as it is. But, if we are to appreciate the value of multidisciplinary care, I feel it important to be a proponent of advocating for such team-building, which of course requires time.
5) I am with you on being uncomfortable in answering the question "what is normal?" While I too believe that there should be no solid line in defining 'normal' from 'abnormal' (rather seeing it as a continuum between the two), I think that nobody other than the parents should be able to project their view of an answer to this question. Such an answer requires reflection and an awareness of one's values - which is what I argue in favour of in the discussion of the findings - that parents (and HCPs as well) should be encouraged to explore these values.
6) Without knowing too much about psychology, I think that if able to better support individual HCPs, then certainly psychologists would be valuable. I'm not sure if they necessarily need to be a 'part of the team', but they should definitely spend some time embedding themselves in the NICU and antenatal settings, so as to better understand the issues faced by all HCPs working this environment, so as to better understand the ethical issues and moral distress/residue that they encounter.
Thanks again for your extremely well thought out questions and comments.
Thank you to all for your lively discussion and insightful remarks. I will reflect on them all and incorporate those thoughts into my work.
Look forward to discussing with you further in Montreal.
Best wishes and thanks again.
Mark
Hi Mark, Thanks for your
Hi Mark,
Thanks for your thoughtful replies. I too am looking forward to Montreal.
Alex.
Hi Mark, Like Eva, I’m a
Hi Mark,
Like Eva, I’m a part of a discussion group on extreme prematurity at Université Laval, so I would like to have your opinion on a few question/problems that arose in those discussions.
Do you think it is fair to put most of the weight of the decision on the parents when it comes to resuscitation at the limits of viability? A decision is often needed very rapidly, which might not give enough time to parents to evaluate their goals and values. Also, do you think that the HCPs should consider (evaluate?) the emotional and physical state of the parents at the time of the decision? Prematurely giving birth is an emotionally and for the mother physically traumatic experience, which may temporally hinder their decision making.
Thanks,
Eric
Hi Eric, You pose some
Hi Eric,
You pose some really interesting and important questions. They are very difficult to answer concretely as they lie at the heart of the difficulty of this type of decision-making, but I will spend some time elaborating on what came from our study.
I agree with you that when decisions are needed very rapidly, parents do not have nearly enough time (or any time for that matter) to evaluate their goals and values. When this is the case, HCPs would likely take the lead, but would preferably brief parents in understanding that even if the infant is given a 'trial-of-life', that difficult decisions lie ahead regarding whether to continue care, or switch to palliative care.
As for your second question, certainly the emotional and physical state of the parents at the time of the decision can affect their competency in making a decision. For these reasons, they should be supported and counseled, if time permits. While I completely agree that giving birth prematurely is an emotionally and physically traumatic experience, what should never be left out of the picture is that the family (and their values) as they are the only ones who will experience the long term outcomes of the decisions made in resuscitation. For that reason, but the very real trouble with them making a decision during emotianally and pysically stressful times, we found that HCPs should best try to guide parents towards a decision. However, the term 'guidance' refers to 'assisting parents towards a decision that is consistent with their own values', rather than guidance delivered in a paternal sense of 'knowing best'. HCPs need room to utilize their expertise in issues in resuscitation (especially in utilizing their experience), however, without having some sense of parental values in making a decision, the risk is run that decisions might be made in which the parents may end up feeling regret and powerlessness.
So, as you can see, it is a delicate and difficult balance. But from the results of our study, we saw the importance of putting the family (and their values) as the focus of the decision-making process. Without respecting their experience of premature birth, and the implications that they will face, decision will be made that do not address the complexity of their own unique personal circumstances.
I hope that this provides some insight, but its a difficult to lay down a hard line to difficult ethical questions.
Best wishes,
Mark
Whoops, sorry, I think I
Whoops, sorry, I think I might have posted the same comment twice.
Thank you Eric, I think a
Thank you Eric,
I think a big fear for any parent is that their child will be born early and they will not be prepared emotionally to make the big decisions required of the time.
I agree with Mark, in that at the time decisions are required on the spot with no time to fully evaluate their goals and values. The information provided by the HCP is the most important aspect in the short decision making process.
Pia and Jo's comments on the appropriate way to inform parents of the risks associated with preterm birth. Though all parents should be briefed on the risks of preterm birth, only parents with a risk of extreme preterm birth should be extensively informed. This information must be presented in a multifacited way such as oral and written. This will allow parents to process the information in a timely manor. Statistics are an important aspect to be included but should not be the main focus. Information about determining goals and values would be important in the discussions with the parents.
Heather