Healthcare unfortunately sometimes sees patients as win or lose. Was the patient saved or cured or did the patient die is the common judge of success. Death, disease and incurable ailments though are part of life and healthcare should not see the death or survival of an individual as a grading process of competence. While all measures and standards of care should be performed and addressed properly, sometimes patients die or cannot be cured and the end result should not be seen as defeat in healthcare. Instead healthcare professionals must be able to extend themselves to another level of care that looks to treat the entirety of the human person who is dying. When the person who is terminal receives the best care that reduces physical and emotional discomfort, then a healthcare professional can truly say they succeeded. Success should be graded on giving the best that is available both physically and emotionally.
Many physicians and nurses are not well versed or well trained to give bad news though to the terminally ill or able to communicate the death of a loved one to a family. Instead, many times, it is handled very sterile or avoided at all costs. Elisabeth Kubler Ross began to turn the table in the 1980s on this sterile and numb approach to communicating death. It, however, involved an entire re-understanding of life and death, medical success vs medical failure and a better understanding of helping those in grief. Of course, this led to Elisabeth Kubler Ross’s famous 5 stages of grieving, which mistakenly were applied to grief in general, when they were designed to retrace reactions of the terminal ill to death. Denial, anger, sadness, bargaining and ultimately acceptance became the norms of grief reaction and they mistakenly became seen as fixed, sequential stages, instead of reactions of the terminally ill to bad news. They still serve as foundational pieces of emotions associated with loss and can be utilized in helping those in healthcare to react to the emotional response to death and loss itself.
Since the turn of the century, the need of grief counseling, pastoral counseling and training in giving bad news to patients has increased. While many healthcare professionals still lack bed side manner, the push to train and certify, and prepare others through module training programs has increased. Healthcare facilities are starting to see the need of trained professionals who can deliver the necessary news in a solemn and professional manner.
In regards to this, those trained learn a variety of grief theories about loss, crisis intervention, and communication skills. In many cases, the patient or family is already in a sense of anxiety due to the wait and emotions are tense. Caregivers should be prepared for a myriad of emotions that can erupt when a bad diagnosis, or death is revealed. Understanding the situation, being calm, and allowing the individuals to express initially is key.
While many caregivers would rather keep it simple, detail is important. The family or person will have numerous questions. A facility should have a quiet and private place to be able to aid the family in digesting the news. Questions will emerge and answers should give the most up to date factual information regarding the situation. In some cases, crisis intervention and emotional support will be required, but one should not limit information. Information should be given as the family is able to digest it. A later follow up meeting may be needed to allow the family to grieve until they are able to ask more logical questions. Hence communication of diagnosis is key but also an understanding of the family system and the emotional response. Each experience will be unique and require adjustment in how it is presented. Silence, or avoidance however is never the answer.
The article, ‘Delivering Bad News to a Patient” by Monden, K., et. al. takes a closer look at question system employed by Rabow and McPhee. The article states,
“Rabow and McPhee also proposed a model for delivering bad news called ABCDE: A, advance preparation; B, build a therapeutic environment/relationship; C, communicate well; D, deal with patient and family reactions; and E, encourage and validate emotions”
Monden, K., Gentry, L., Cox, M. (2016). Delivering bad news to patients. Baylor University Medical Center. 29(1). 101–102.
Within the context of terminal diagnosis, the bad news could be shocking to those present but it could also be divisive. Some family may wish to keep things a secret, or others may enter into a state of denial, while some may optimistically seek next step solutions. It is essential to understand the state of shock the family is in and to accurately give the diagnosis, statistics and courses of option.
Within immediate death, some family may want more details, while others may fall into silence. Others my need crisis intervention, coping advice, or the aided in relaxing from the traumatic news. Again, training modules with case studies can help prepare healthcare providers with better methods to alleviate the pain and better aid the family in hearing the horrible news of the death.
While some healthcare professionals are naturally better at helping families emotionally, there still must be a continued emphasis on training. Many families leave without any emotional support, confusion, and lack of full information regarding the death or the terminal diagnosis. This only compounds the trauma and emotional stress. Hence it is important that training be applied to all staff. It is fine to have one particular staff member who is more emotionally able to communicate bad news, but sometimes, it is still essential for the primary care giver to be able to answer questions and help those in distress.
AIHCP offers a certification in Pastoral Thanatology that aids professionals in learning more about caring for the terminally ill as well as being better equipped to communicate difficult diagnosis or news. The program equips professionals with knowledge on grief counseling as well as care for the terminally ill. It also equips the professional with information on death itself and multiple cultural, pastoral and religious beliefs related to death. The program is online and independent study and open to qualified professionals seeking a four year certification in Pastoral Thanatology. While many chaplains take the program, it is highly encouraged that nurses and other healthcare professionals also learn more about pastoral care of the dying and giving bad news.
Postavaru, G., McDermott, H., Biswas, S., Munirm, F. (2023). Receiving and breaking bad news: A qualitative study of family carers managing a cancer diagnosis and interactions with healthcare services. Leading Global Nursing Research, 79(6). 2211-2223. https://doi.org/10.1111/jan.15554
Coyle, N. , Manna, R., Shen, M., Banerjee, S.M, Penn, S, et. al. (2015). Discussing Death, Dying, and End-of-Life Goals of Care: A Communication Skills Training Module for Oncology Nurses. Clinical Journal of Oncology Nursing 19(6). 697-702.
Monden, K., Gentry, L., Cox, M. (2016). Delivering bad news to patients. Baylor University Medical Center. 29(1). 101–102. Access here
“How can doctors share bad news with patients?”. Beresford, L. (2017). Medical News Today. Access here
“Delivering bad news: Helping your patients retain dire details”. Augnst, H. (2009). Contemporary Pediatrics. Access here
Death is as common and as natural as birth but death discussion is always avoided till its usually too late. With death being a reality, the more we discuss it, the more we can understand it but also the connections we have with others and their thoughts and desires. Talking about death does not illustrate a morbid fascination but recognizes a reality that time is precious and we must enjoy the time we have with our loved ones. No next day is ever promised. Unfortunately, many fear this topic or wish to deny it.
The article, “If death happens to us all, we should probably talk more openly about grief” by Dinah Lewis Boucher discusses the impact of losing someone and the long mental process to learn to live without that person. Boucher states,
“Three years after my husband died, his toothbrush remained in our family’s toothbrush holder. It didn’t make any sense, of course. He didn’t need it. But there it stood, three toothbrushes altogether. Our daughter’s, mine and his. It was a visual representation of how I wished for it to be. But our family was down to two. People say time is a great healer, and the pain of grief changes — over time. But if we aren’t active in the process of grieving, some say it may not change so much. “
“If death happens to us all, we should probably talk more openly about grief”. Boucher, D. (2022). ABC News
Whether we discuss death or not, it will come to our loved ones and eventually ourselves. The process will always be difficult since the lost of a loved one is so intense due to attachments and love. The brain does not respond well to such change. The neural networks need to realign to the new situation and past memories can haunt. The adjustment period is only adjustment. It is not a recovery but a realignment to new realities. Those who do their grief work and avoid complications within the process still remain sad but are able to move forward in a healthy way and find joy in the world despite the loss and the pain associated with it.
Hence, discussing death while others are alive is important to understanding the needs of our loved ones and their wishes. It allows one to express emotions now instead of when it is too late. It is recognizing that everyday is not guaranteed and that time goes by fast. It helps one also understand the inner thinking and wishes of the loved one and what the loved one would want for us if he/she passed away. Concretely sharing these moments instead of speculating what ifs after death can alleviate future suffering.
The phobia of death can paralyze an individual into a state of inaction during life. It can prevent a person from expressing love the day of instead of when its too late. It can make one unprepared and not ready for the loss of a loved one. It is hence important to embrace the reality of life which includes death and express fears or anxieties associated with it to others. One will discover it is not a morbid discussion but a a discussion that is very real and an opening to emotional connections that will not be there one day.
After acknowledging death with loved ones, one will understand spiritual and emotional sides of the loved one that one may not have known before. There may also exist a greater peace if something occurs knowing each other’s feelings and not being left to wonder what one would think or do after they passed away. When death is discussed, one discovers not only religious beliefs, but also how one would deal with particular situations when one is gone. One is hence better able to handle situations or execute legal decisions with more certainty and confidence instead of guesswork.
Trying to introduce this much needed conversation can at first be difficult and maybe even awkward. One does not merely begin the conversation with death itself but it is gradually implemented from such topics of legacy, the future, desires, or religious thoughts. The death of a celebrity can be an excellent introduction to the topic as well.
While death is naturally feared because of its unknown aspects, death discussion takes away the taboo element of it and helps individuals discuss and better understand implications of it. It allows one to also be better prepared for one’s own death from all financial and spiritual concerns. Many individuals today pre pay for funeral expenses, urns and cemetery plots. This is not pessimistic or morbid planning but real and true planning for eventual reality. Live everyday and stay healthy, but do not allow one’s fear of speaking about death to become a pathology.
Some suffer from a mental pathology of Thanatophobia or the fear of death. This is more than a natural fear of the unknown but a topic that physiologically upsets the person to such an extent that the topic causes extreme anxiety and physical reactions such as higher heart beat or blood pressure. While some may have been exposed to something traumatic others can merely develop this fear. If the fears and reactions persist for longer than six months, then professional help may be needed. Therapists usually utilize cognitive behavioral therapy to help understand the phobia as well as exposure therapy where individuals are gradually under the guidance of a counselor are exposed to concepts of death.
Death discussion can seem taboo or morbid but it is a healthy discussion that recognizes reality and life itself. Pastoral Thanatology is the field of care where individuals in ministry help others prepare for death, as well as, help others deal with the death of a loved one. Chaplains, ministers and others in Human Service fields need a strong training in Pastoral Thanatology to better help individuals deal with death issues.
AIHCP offers a four year certification in Pastoral Thanatology. Qualified professionals can earn the Pastoral Thanatology Certification and apply the knowledge and training to their own ministries and help others face and cope with the reality of death. The program is online and independent study. After completion of the core courses, one can apply for a four year certification.
“Thanatophobia (Fear of Death). Cleveland Clinic. (2022). Access here
“Thanatophobia (Fear of Death) Explained”. Fritscher, L. (2023). VeryWellMind. Access here
“We Need to Talk About Death”. Beaumont, A. (2017). Psychology Today. Access here
“Talking About Death With Family: 7 Tips to Start a Dialogue”. Vasquez, A. (2022). Cake. Access here
The two most important events in life is birth and death but the later is rarely spoken about. Individuals fear and dread death and avoid the existential topic as much as possible, but death talk is important. This important discussion helps focus individuals to the reality of life and that days are precious. This discussion helps prepare others express feelings and put financial and inheritance matters to rest. It allows the deceased to have his or her wishes known for funeral and burial. Yet, despite the healthy discussions that the topic of death brings, it is still avoided as if the topic itself will bring about the existential event.
Individuals dread and fear death so they hope to avoid, dismiss and ignore it. It can only happen to others not oneself and the mere discussion seems morbid too many. Yet this important discussion is critical and taboos, fears, and myths about speaking about death need to be removed from society. Death talk itself is healthy. Many in Pastoral Thanatology ministry minister to the dying but the topic of death has been avoided and even when dying is occurring, no family or friends know how to broach the subject. This leaves the dying person very much alone. It is healthy to discuss death in the prime of life as well at the final moments.
The article, “If death happens to us all, we should probably talk more openly about grief” by Dinah Boucher looks at why many fear discussing death or even talking about the pain associated with death of a loved one. She states,
“Identity rupture is a common response to loss, Professor Gill Straker and Jacqui Winship explain.’ For sure, it affects our identities. Our sense of ourselves is intricately associated with our sense of ourselves in relation to others. So when we lose a really important person in our lives, our identity has to kind of shift and change to adapt'”.
“If death happens to us all, we should probably talk more openly about grief”. Boucher, D. (2023) ABC News. Access here
Hence, whether it is about one’s own mortality or losing a loved one, the fear and pain of the subject can paralyze one from speaking about it or trying to understand it. This can be unhealthy for the grieving as well as unhealthy for those who fear any discussion about the event of death. Death itself or when someone dies cannot be swept under the rug but needs to be discussed and understood in order to have a healthier understanding of it as well as the ability to heal.
The Importance of Having End-of-Life Conversations
End-of-life conversations are crucial for several reasons. Firstly, they allow us to express our wishes and preferences for our own end-of-life care. By discussing our desires in advance, we ensure that our loved ones are aware of our choices and can honor them when the time comes. Additionally, these conversations provide an opportunity for us to clarify any misunderstandings or misconceptions about our preferences, preventing potential conflicts or disagreements among family members.
Secondly, end-of-life conversations foster emotional and psychological well-being. They can help alleviate anxiety and fear surrounding death by providing a platform to openly express concerns and emotions. By addressing these concerns, we can find comfort and support, allowing us to cope with the inevitable reality of our mortality.
Lastly, having end-of-life conversations enables us to support and comfort our loved ones. By sharing our thoughts and wishes, we provide them with guidance and alleviate the burden of making difficult decisions on our behalf. These conversations also encourage open communication within the family, fostering deeper connections and understanding during a time that can be emotionally challenging.
Common Challenges When Discussing End-of-Life Topics
Despite the importance of end-of-life conversations, there are common challenges that can arise when discussing these topics. One challenge is the discomfort or fear associated with discussing death. Many individuals find it difficult to confront their mortality or to acknowledge the possibility of their loved ones passing away. This discomfort can hinder open and honest communication, making it challenging to have meaningful conversations.
Another challenge is the cultural or societal taboo surrounding death. In many cultures, death is seen as a morbid or forbidden topic, leading to a lack of awareness and understanding about end-of-life matters. This taboo can create barriers to open dialogue, preventing individuals from expressing their wishes or seeking the necessary support and guidance.
Additionally, differing perspectives and beliefs within families can pose challenges. Family members may have varying opinions on end-of-life care, leading to potential conflicts or disagreements. It is important to approach these conversations with empathy and respect, acknowledging and validating differing viewpoints while working towards a shared understanding.
Benefits of Having the ‘Death Talk’
Despite the challenges, having the ‘death talk’ offers numerous benefits. One of the significant advantages is the peace of mind that comes from knowing that our wishes will be respected and honored. By discussing our end-of-life preferences, we can ensure that our values and beliefs are upheld, providing a sense of control and dignity during our final days.
Another benefit is the opportunity to strengthen relationships and deepen connections with our loved ones. End-of-life conversations allow for intimate and vulnerable discussions, fostering trust and understanding among family members. These conversations can create a safe space for emotional expression and support, ultimately strengthening the bond between individuals.
Furthermore, having the ‘death talk’ can alleviate the burden on our loved ones. By openly expressing our wishes, we provide clarity and guidance, reducing the stress and uncertainty that can arise when making difficult decisions on behalf of someone else. This proactive approach ensures that our loved ones are equipped with the necessary information and can focus on providing comfort and support during our final moments.
Key Elements to Consider Before Having End-of-Life Conversations
Before initiating end-of-life conversations, it is essential to consider certain key elements. Firstly, it is important to reflect on our own values, beliefs, and desires regarding end-of-life care. Taking the time to understand our own wishes allows us to articulate them clearly to our loved ones. This self-reflection also helps us identify any fears or concerns that may arise during the ‘death talk,’ enabling us to address them proactively.
Secondly, it is crucial to choose the right time and place for these conversations. Finding a comfortable and private setting can create a safe space for open and honest dialogue. It is important to ensure that all participants feel at ease and are free from distractions, allowing for focused and meaningful discussions.
Thirdly, considering the preferences and needs of our loved ones is vital. Each individual may have their own unique approach to discussing end-of-life matters. Some may prefer direct and straightforward conversations, while others may require more time and gentle guidance. Being sensitive to these preferences can facilitate effective communication and ensure that everyone feels heard and understood.
Strategies for Initiating End-of-Life Conversations
Initiating end-of-life conversations can be challenging, but with the right strategies, it can become more manageable. One effective approach is to start the dialogue gradually. Begin by mentioning the importance of discussing end-of-life matters and expressing your own willingness to have these conversations. By framing it as a shared responsibility, you create an environment that encourages participation and collaboration.
Another strategy is to use open-ended questions to prompt discussion. Instead of asking yes or no questions, ask questions that invite reflection and personal experiences. For example, you can ask, “Have you ever thought about what kind of care you would like to receive towards the end of your life?” This approach encourages deeper conversations and allows for a more comprehensive understanding of each individual’s thoughts and wishes.
Active listening is also crucial when initiating end-of-life conversations. Give your loved ones the space to express their thoughts and emotions without interruption. By truly listening and validating their feelings, you create an atmosphere of trust and respect, facilitating open and honest communication.
Tips for Effective Communication During End-of-Life Discussions
To ensure effective communication during end-of-life discussions, it is important to keep certain tips in mind. Firstly, use clear and concise language. Avoid using medical jargon or ambiguous terms that may cause confusion. Instead, opt for simple and straightforward language that is easily understood by all participants.
Active and empathetic listening is another essential tip. Give your full attention to the speaker, maintaining eye contact and providing non-verbal cues that show you are engaged in the conversation. This active listening fosters trust and encourages individuals to share their thoughts and concerns openly.
Respecting differing opinions and beliefs is also crucial. End-of-life discussions can bring to light varying perspectives within a family. It is important to approach these differences with empathy and understanding, acknowledging that each person’s perspective is valid. By creating a non-judgmental environment, you encourage open dialogue and prevent potential conflicts.
Addressing Fears and Concerns During the ‘Death Talk’
During the ‘death talk,’ fears and concerns may arise for both the initiator and the participants. It is important to address these fears and concerns openly and honestly. By acknowledging and validating these emotions, you create a space for individuals to express their anxieties and seek reassurance.
One common fear is the fear of loss and separation. End-of-life conversations can bring to the surface the reality that our loved ones will not be with us forever. It is important to provide emotional support and reassurance, emphasizing the importance of these conversations in ensuring their wishes are respected and their legacy is honored.
Another fear that may arise is the fear of burdening loved ones with difficult decisions. Assure your loved ones that by discussing end-of-life matters, you are lightening their burden and providing them with guidance. Emphasize that these conversations are an act of love, enabling them to focus on providing comfort and support rather than making challenging decisions.
Resources and Tools for Navigating End-of-Life Conversations
Navigating end-of-life conversations can be made easier with the help of various resources and tools. One valuable resource is advance care planning documents. These documents, such as living wills and healthcare proxies, allow individuals to legally document their preferences for end-of-life care. They provide a clear framework for decision-making and ensure that our wishes are known and respected.
Another helpful tool is the use of conversation starters or discussion guides. These resources provide prompts and questions that can facilitate end-of-life conversations. They offer a structure for the dialogue and can help individuals articulate their thoughts and preferences more effectively.
Additionally, there are numerous organizations and support groups that specialize in end-of-life care and discussions. These organizations offer educational materials, workshops, and counseling services to guide individuals and families through these conversations. Seeking support from these resources can provide additional guidance and reassurance.
Seeking Professional Support for End-of-Life Discussions
In some cases, seeking professional support can be beneficial when navigating end-of-life discussions. Palliative care teams and healthcare professionals trained in end-of-life care can provide guidance and facilitate conversations. They have the expertise to address medical concerns and can offer advice on treatment options and symptom management.
Therapists or counselors specializing in end-of-life issues can also provide emotional support and facilitate communication. They can help address any unresolved conflicts or emotional barriers that may arise during these discussions. Seeking their assistance can promote a more open and constructive dialogue among family members.
Conclusion: Empowering Yourself and Your Loved Ones Through Open Dialogue
Having end-of-life conversations may seem daunting, but they are crucial for our own well-being and the well-being of our loved ones. By openly discussing our wishes, concerns, and fears, we empower ourselves and our loved ones to make informed decisions and provide the necessary support during end-of-life care. Remember to approach these conversations with empathy, respect, and active listening. Utilize the resources and tools available to navigate these discussions, and don’t hesitate to seek professional support when needed. By embracing open dialogue, we can ensure that our end-of-life journey is guided by our own wishes and preferences, providing comfort, peace, and a sense of dignity for ourselves and our loved ones.
Call to Action:
Start the conversation today. Take the first step towards having end-of-life conversations with your loved ones. Begin by reflecting on your own wishes and desires, and then find a comfortable setting to initiate the dialogue. Remember, open and honest communication is key to empowering yourself and your loved ones through this journey.
Please also review AIHCP’s Pastoral Thanatology Certification and see if it meets your academic and professional goals. The program is online and independent study and open to qualified professionals seeking a four year certification in Pastoral Thanatology
‘Death talk’, ‘loss talk’ and identification in the process of ageing”. Karen West and Jason Glynos. (2014). Cambridge University Press. Access here
“End-of-Life Stages Timeline”. Angela Morrow. (2023). VeryWellHealth. Access here
“The Taboo of Death”. Mark Whitmann, PhD. (2019). Psychology Today. Access here
“What Is Thanatophobia?”. Team VeryWellHealth. (2023). VeryWellHealth. Access here
“Death anxiety: The fear that drives us?”. Maria Cohut, PhD. (2017). MedicalNewsToday. Access here
“Facts to Calm Your Fear of Death and Dying”. Ralph Lewis. MD. (2018). Psychology Today. Access here
In addition to the many painful emotions associated with a terminal illness of a loved one, there are also numerous decisions that need to be made for his or her future. Whether an aging parent, or a young child, and anything in-between, the difficulty in helping the loved one through this final phase can be difficult.
One needs to start considering possible therapies and treatments but also quality of remaining life versus quantity of days. Should one remain in a healthcare facility with treatments unproven or accept the inevitability of death and find joy in the final days of life? These decisions are not easy and especially made harder when the person is unable to make choices regarding their own health.
Please also review AIHCP’s Pastoral Thanatology Certification and see if it meets your academic and professional goals. The program is online and independent study and open to qualified professionals seeking a four year certification in Pastoral Thanatology
Grief experts have labeled the term Disenfranchised Grief to be a type of grief that is hidden due to fear of ridicule, or a type of loss that is not recognized or belittled by others because to others it is outside the range of societal norms or perceived as insignificant. Types of examples can be the loss of a pet, or particular loss that is extremely painful but personal but not acknowledged by society. Another example would be the pain of an individual who may be a boy friend or girl friend who may have lost someone in High School. While the family receives the bulk of the sympathy, the Highschool boyfriend or girlfriend may find themselves on the outside looking in. Another example of Disenfranchised Grief pertains to suffering from a stigmatizing disease. Still others who lose a loved one within the LGBTQ community may find a stigmatizing view towards their particular loss. All of these losses are ways society attempts to control how one grieves or what is worthy of grief itself. These type of constraints are an issue that Grief Counseling attempts to unbind in counseling sessions. Acknowledging the loss and grief is key and making awareness to others that these losses matter.
Society attempts to control grief in other arenas as well. Not just merely in what is worthy of grief, but also in how one should grieve in public. Societal norms and standards of public display in the West seem to find contempt in outward expressions of grief. The discomfort of others witnessing a sobbing mother, or a hysterical child grieving the loss of a parent seem out of control and socially awkward. “What’s Your Grief” takes a closer look at this attempt to censure public displays of grief in it’s article “What is Suffocated Grief”. The term labeled “Suffocated Grief” refers to situations where other standards attempt to moderate grief expression. The article states,
“It wasn’t until years later, sitting in a conference listening to Dr. Tashel Bordere, that I realized it was more than that.. I heard the phrase ‘suffocated grief’ for the first time, a term she coined. She explained that for some, their expression of grief is not simply unacknowledged or stigmatized, as in disenfranchised grief, but it is punished. As she described normal grief reactions being penalized, all those calls to security flashed in my memory.”
“What is Suffocated Grief”. Whats Your Grief. December 21st, 2022. Whats Your Grief
Hence even if a grief loss is seen as within the norms of societal grief reaction and not disenfranchised, it still may fall under societal condemnation in regards to reaction to the loss and how that reaction is perceived in public. This literally takes grief bullying to a whole new level and can cause larger issues for the griever.
Grief reactions are not universal. Various cultures and faiths all grieve differently to a particular loss. One standard of expression or mourning cannot be held higher to another. Mourning as a public reaction to loss is the primary target of Suffocated Grief. The prevailing society sets the standards and rules for what is perceived as appropriate. When encountering loss, one’s reaction within a society must meet those societal standards of duration or extremity. When one travels off the path of “proper” reaction then that person is perceived as odd or temporarily insane. The discomfort for others is the primary issue. Individuals sometimes do not know how to respond to a particular emotion of others. Some individuals become uncomfortable or embarrassed when confronted with raw human emotion. Hence, hospitals, facilities and nursing homes will noise regulations or removal of individuals from a particular patient or ICU room when human emotion becomes to raw and visible.
Where is Grief Suffocated?
Suffocated grief unfortunately can be seen in many medical facilities. The ICU can become a very stressful place and the outward mourning of someone who may have passed may cause a considerable upheaval to the point of removal from the facility. Noise and crying in public can be perceived as threatening. Individuals who express themselves in the moment of extreme distress are seen sometimes as insane or out of control. While precautions need to be taken to protect everyone involved, such outward displays of mourning are usually frowned upon in the West.
The same is true within schools. Many minority children who experience more loss than white counterparts are sometimes held to a higher standard when expressing the same loss. They are not permitted to express themselves and when they do, it is seen or perceived as aggressive.
Suffocation of grief is especially seen in the work force. Many positions have little to no paid bereavement leave. Instead individuals are forced to return to work while grieving and expected to maintain composure and professionalism.
It seems, once the final shovel of dirt has been thrown over the grave, everyone should become silent and move on with life without expression.
Understanding Suffocated Grief is important because it opens one to the pain of others. It is a sign of empathy to realize others are suffering. Instead of turning away, one needs to open arms. Pastoral Care and better training in grief are definitely needed in the caring professions. Medical professionals and nurses need to become better trained in the reactions of grief. A less sterile response to the needs of family experiencing a loss need to be implemented. How medical professionals discuss death and how they reveal these things can play large roles in helping others experience the bad news in a more quiet way. When these basic decencies are not met, individuals are more likely to be angry or devastated by a loss and display more outward mourning.
These feelings need to be respected within a safety net that prevents physical harm to oneself or damage to property.
Mourning or outward expression of grief within society is a very subjective thing. Cultures differ across the world. One way of reacting to loss should not be sanctioned by another community. Instead, others should be able to express grief and have the time to express grief without fear of ridicule. Healthcare professionals should receive training in helping others when reactions to grief and loss are experienced.
Alan Wolfelt lists a number of Bill of Rights for Mourners that cannot be taken away. One is to express oneself uniquely during loss and another is to experience “grief bursts” without fear of societal condemnation or grief bullies. It is important to grieve and express if one feels the need to do so.
The American Academy of Grief Counseling offers both a Grief Counseling Certification and also a Pastoral Thanatology Certification for qualified professionals in ministry, counseling and the medical fields. The programs are open enrollment and independent study. If interested, please review AIHCP’s Grief Counseling and Pastoral Thanatology Programs.
“Disenfranchisement and ambiguity in the face of loss: The suffocated grief of sexual assault survivors.” Bordere, T. (2017) Family Relations: An Interdisciplinary Journal of Applied Family Studies, 66(1), 29–45. APA. Access here
“THE MOURNER’S BILL OF RIGHTS”. Alan Wolfelt. December 21st, 2013. TAPS. Access here
“The Ways We Grieve”. Ralph Ryback, PhD. February 27th, 2017. Psychology Today. Access here
“What to Know About Disenfranchised Grief”. WebMD Contributors. October 25th, 2021. WebMD. Access here
It is terrifying to be diagnosed with a terminal illness or to discover a close family or friend discovers such a terrible diagnosis. There are many existential reactions to such a proclamation. Individuals respond differently to such a thought. Finally death becomes a reality and how one deals with this reality determines one’s final chapter of life. This video reviews the many aspects and reactions that accompany a terminal diagnosis.
Please also review AIHCP’s Pastoral Thanatology Certification and see if it meets your academic and professional goals. The program is online and independent study and open to qualified professionals seeking a four year certification in Pastoral Thanatology.
Upon a worrisome visit to the doctor, eventually in one’s life, one will come to the grips of existential crisis, where one must deal with a life or death illness, or hear the terrifying words, that one is dying. For some, these words come earlier in life, for many, later, and for some, death can come like a thief in the night. Those who are granted the ominous warning are given a blessing and a curse. A blessing to prepare oneself and others, to put things right and affairs in order, but also a curse in knowing the clock is fearfully clicking to a deadline that is unavoidable. Please also review AIHCP’s Grief Counseling Certification.
There is a myriad of emotions and feelings that one goes through when a terminal illness is announced. An existential reality of one’s own finite nature is made rawly known to the intellect. What was once considered an abstract but real concept suddenly becomes personal and intimate. One comes to the conclusion that death will concretely and definitely happen. It is no longer a future imaging of how but becomes a concrete concept of now and here. Please also review AIHCP’s Grief Counseling Courses
How one perceives life and existence itself plays a large role in the existential dread of this bad news. Levels of fear and anxiety are measured and varied in regards to one’s own existential beliefs. Someone who is profoundly convinced of life after death and molded by an undying faith, may feel a sense of fear, but also a sense of hope and reward, while one who holds empiric and only observable phenomenon as a basis for existence, may feel a deeper dread of creeping into nothingness. Some individuals are less attached to the temporal reality and are able to sense a stronger sense of purpose and peace beyond the observable world. Those of this deeper faith, whether rightly placed or not, will react quite differently to the bad news of approaching death than one of lesser or no faith.
Fear of the unknown still exists even if in the smallest grain to the faithful. So naturally, the evolutionary push to exist when challenged will spring forth within the soul a type of fear. The fear of the unknown still exists for those of faith, but the levels of fear that may surround one who is terminally ill, differs greatly in intensity. One of faith upon the announcement of bad news will definitely still feel a sense of fear and be forced to reckon with the unknowable. This type of fear is a natural reaction. Since one’s conception, the urge to exist is programmed within the body. The urge remains a strong driving force.
For those facing death, a general fear may also be replaced with a more acute fear of the now. Fear of sharing this news, or keeping it to oneself. Fear of the disease itself and what this particular disease may do to one’s body during the final phases. Oneself may fear the pain, the treatments, the side effects and quality of life or even the fear of leaving family and children without one’s guidance and protection. Obviously these are grounded fears to one who has come to a firm acceptance. While initially one may be swarmed with questions and options, one may soon find oneself consumed with collecting as much information about the disease or condition, understanding pain management or reviewing various extraordinary measures to preserve life. Understanding the enemy can sometimes qualm some fear and even give a glimpse of hope. One finds oneself with more power over fear when one faces the enemy across oneself. Some individuals face the enemy, while others choose to live in fear and hide from it. One in the end accepts how they will face death, either with a strong will, or a broken one. Accepting death but facing it with a strong will despite fear is the true definition of courage.
Due to this natural fear of death, even among the most spiritual and religious, one when faced with this terrible thought will undoubtedly deny it. Elisabeth Kubler Ross who worked with the terminally ill observed this natural human reaction to reject bad news initially. Something so frightful at first refuses to be processed by the brain. Bad news is met with an equally powerful rejection of it. As one receives this bad news then, one will probably initially reject the sentence of death. How long this reality takes to sink in may differ among some. Some may seek additional medical opinions, until all options are removed. Others will proceed with elaborate alternative therapies in hope of a cure. For some, hope can be a evolutionary device for survival. It definitely is not something to rejected but when hope blinds oneself to such an extent that is masquerading as denial, then it can become problematic to oneself and prevent oneself from dealing with the reality of death.
Death itself is a process that many run and flee from. Evolution to survive engrains this feeling into oneself. Yet, if one stops and realizes that death is a process one must face, then maybe one can allow oneself the process of dying properly. Many cultures value a good death. A good death is as part of life as birth. Dying well, handling oneself well and maintaining dignity is critical to the last chapter. Long term denial strips one the opportunity to handle affairs, repair relations, prepare the mind body and soul and live the final chapters. So, absolutely, upon terminal diagnosis, one will feel fear and denial and this is OK. What one does not wish to continue to entertain is a long term denial. Hope should not be squashed, but denial should not be masked as hope either.
Oneself may think if one ignores the horrible diagnosis that it will go away. For this reason alone many in denial, may keep a terminal diagnosis as a secret from friends and family. One will ignore checkups and important procedures and postpone wills and other critical business at hand. These types of secrets are part of denial at its core. Oneself may feel as if one is sparing others grief, but this type of internalization of bad news only denies the reality and creates less time for others to express love and accept reality.
Following this diagnosis, other emotions may erupt within oneself. As Kubler Ross points out in her famous stages of grief, one experiences far more than denial upon the initial announcement of bad news. One will experience also a range of emotions with the first minutes or days or weeks or months. Anger is a powerful emotion that may erupt. One may find oneself angry at God, or others. One may feel one’s life has been stolen or cut short. Others may become jealous of others who were granted better health. Again, in grief, one cannot deny these initial feelings, but understand them and see where this anger comes from. While one may feel like they may be treated unfairly, one cannot allow anger to turn into envy and become caustic within one’s very being. There is little time left with a terminal illness and negative emotions and negative energies while acknowledged should not be permitted to fester, unless one wishes for the soul to also suffer with the body.
With the lamenting of death, some will feel greater melancholy. How long one grieves the impending loss of life, like fear itself, varies upon the spiritual nature and resilient nature of oneself. One should clearly come into contact with the sadness of loss of one’s physical life, but again, like anger, it is important to evaluate the emotion within its proper degree. Some may go into a deep depression or no longer wish to live. Oneself may recede to the shadows well before the date of death. When sadness of this level overtakes oneself, then one must realize that the diagnosis is now taking more life than it originally took before. The intense grief is taking what is left. It is stealing the final days of sunshine, family memories and expression of love.
With such deep emotions, sometimes it may be good to express these feelings. Some may find solace in their family and friends, but others may feel a fear to cause them more pain. While this is noble, in many ways, family and friends wish to help one carry this cross. Oneself should not feel isolated to the point where one has none to share the fear and emotions of dying. An additional option is finding others in support groups or other social venues where others of like diagnosis can meet and share emotional fears and acute physical symptoms. A good balance between sharing with family and other like diagnosed individuals can play a great tool in helping one face the emotions of one’s diagnosis.
Kubler Ross pointed out that many may also bargain. As if one has a final say with the grim reaper, oneself may feel the need to negotiate with the angel of death. This sense of powerlessness is lessened with bargaining and creates an illusion as if oneself can negotiate the final days. Oneself may ask, if I can only have an extra year, or have only this procedure instead the other procedures. This illusion of power and control over death is merely another way oneself may try to create one’s own ending. Instead of focusing on “ifs”, oneself should focus on the realities and what can be done within the time given. Less time bargaining and more time doing is a far better way to accept the angel of death.
Upon this terrifying news of one’s own impending death, one can react in a multitude of ways, intellectually and emotionally, but while no emotion is initially to be ignored, there is clearly a better way to face death. It is up to you, the person facing the terminal illness, how you will face the final chapter in your life and no-one else but you can author that chapter.
If you would like to learn more about death and dying, or about AIHCP’s certification programs in Grief Counseling and Pastoral Thanatology, then please review AIHCP’s online programs. The Grief Counseling Certification and Pastoral Thanatology Certification Programs are both online and independent study and open to qualified professionals seeking a four year certification.
Elizabeth Kubler Ross Stages of Dying. Please click here
Near Death Experiences are a universal phenomenon throughout the world. No culture is void of their presence. What does it mean? Is there a scientific explanation or is it a metaphysical experience?
Please also review AIHCP’s Pastoral Thanatology Certification as well as AIHCP’s Grief Counseling Certification. The programs are online and independent study and open to qualified professionals seeking a four year certification.
Spirituality is part of everyone. The whole person, mental and physical. While spirituality is more individual than social, many doctors do not give the holistic care to the entire being of the patient. Doctor sometimes focus more on the body, recovery and failure based on life or death. Many times the pastoral and spiritual issues are not identified. The patient has multiple needs and even for the non religious, many have spiritual needs or at least spiritual acknowledgement during grief and loss during care.
The article, “Does spirituality belong at the doctor’s office?” by Jen Rose Smith takes a closer look for the need of pastoral and spiritual care of patients. She states,
“In fact, many patients would like to discuss spiritual matters with their health care providers: One study found that 83% of patients want physicians to ask about their spiritual beliefs, especially when they’re facing life-threatening illness, serious medical conditions and bereavement. “A high percentage of people, if they’re in the hospital for a physical illness, would like to talk to their physician about spiritual matters and have a conversation,” said Dr. John Graham, president and CEO of the Institute for Spirituality and Health at the Texas Medical Center, a cosponsor of this month’s conference.”
Please also review AIHCP’s Pastoral Thanatology Certification and see if it meets your academic and professional goals. The program is online and independent study and open to qualified professionals seeking a four year certification in Pastoral Thanatology
Many patients who are dying face a sterile environment in a hospital, not comfortable and with many good intentioned healthcare professionals. Unfortunately, many healthcare professionals are not trained to help individuals deal with death, or are able to emotionally and spiritually offer consolation. The death of a person is seen more as a failure than seeing death as part of a new step in existence or part of living itself.
In some cases, the dying patient is cared by also an older relative who also is facing emotional as well their own physical struggles. This can also compound issues.
The dying patient in essence has multiple needs from a physical, emotional, mental and spiritual standpoint. They need not only physical care but whole care of their entire essence. Death and dying is a scary time in life but it is part of life. Death is not a failure, nor is it something unnatural. It is the second biggest event in one’s life next to birth itself. Yet it is shunned due to various taboos. Helping someone die well is part of the importance of end of life care. Palliative Care looks to help individuals deal with cancer life diseases, while Hospice prepares the person for death by not looking to necessarily heal but manage symptoms.
Hence care for the dying is usually divided up amongst various groups from doctors to nurses to family to ministers and chaplains. Each playing a pivotal part. In some cases, individuals fall through the cracks and their most important emotional and spiritual needs are neglected. To ensure complete care though, it is important to understand a patient’s rights when dying and what are the most important aspects to address for the dying
Looking at physical needs are the first aspect. It is essential to give comfort. Pain management, breathing, and overall comfort is key. Pain management looks to address pain and discomfort from a chronic and acute sense. Unfortunately, not all pain can be caught in time and in some cases, individuals needlessly suffer from a physical standpoint. Legal statues have been passed that insist that treating pain is essential part of care.
Beyond pain, other issues such as breathing, skin sores, insomnia, loss of appetite, constipation, dehydration, nausea and fatigue are all issues caregivers must address in providing care to the dying. Keeping the patient comfortable and out of distress is a key part of care of the dying patient and it is a right of every human being to die with dignity and limited pain as possible.
In these cases, the six month period of hospice can supply a person with many pain management strategies. Unfortunately, many individuals do not utilize this service or consider it a taboo of giving up on life. None of this is true. In fact, some may recover or live longer, but this is not the goal of hospice. Hospice is about pain management and comfort. This is why it is so important to utilize to maintain one’s own dignity and comfort in dying.
Beyond these physical needs comes the numerous emotional and mental needs of the dying patient. Many want to be healed or fear death. More pastorally trained healthcare providers can also give the dying some sort of care in this regard. First, by speaking to them as a person. This is critical. Caregivers need to speak to dying as the living. Many are spoken about in the shadows as if they are already gone. It is important to understand the emotional grief of the dying. False promises are not encouraged but hope. Hope that they will not die alone. Hope that their wishes will be carried out. Hope that they will be remembered. And in some cases, discussing death no matter how uncomfortable.
Many dying wish to discuss the elephant in the room but are left to the side and emotionally left to themselves while family mourn them in advance or nurses treat them merely as a number. This is truly sad because the dying are still alive. They still have emotional needs and desires.
Beyond these emotional issues is also the spiritual. This is a more difficult road to cross because some individuals may be of a different faith or have no faith at all. One should speak to the family or look for cues. One should not look to convert one to another ideal, but merely discuss faith or what the dying wishes to express and ensure that the proper religious authorities meet their spiritual needs. Many religious cultures have a variety of needs to be met as death approaches and death anxiety can be lessened by many when religious needs are met.
As an individual embarks on the road of death, they need companions to help them. Due to taboo of death discussions, or seeing death as a medical failure, or seeing patients not as full human beings, then dignity in death is lessened. It is important for care givers to ensure full human dignity at the physical, emotional, mental and spiritual levels are met for the dying.
Please also consider reviewing AIHCP’s Pastoral Thanatology Certification and see if it meets your academic and professional goals. The program is online and independent study and open to qualified professionals seeking a four year certification in Pastoral Thanatology
Care of the Dying Patient edited by David A. Fleming and John C. Hagan III