Departures and Discoveries: Navigating Death’s Landscape through Dialogue

“Dying well is a bequest that you leave to those you love, probably the only thing that in the end will not be eaten by moths, apportioned by lawyers, or bought for quarters in a yard sale. Dying well is the way you could be known by those you won’t live long enough to meet, the way by which they might feel loved by you after you die.” —Stephen Jenkinson, Die Wise: a Manifesto for Sanity and Soul

What does that mean, to die well?

As a teacher for a decade, Lesley understands the power of a well-placed question. This is, after all, what the “inquiry-based learning” referred to by academic literature, is all about. She’s also currently training to be an end-of-life chaplain, and weaves death/grief literacy into her classroom in order to prepare students for the inevitability of loss, while fostering resilience, connection, meaning, and empathy in their lives and relationships.

For Kim’s part, her clinical work has taken her down dark roads of devastating grief. She has witnessed—time and time again—the profound capacity for healing and connection available to those who are able to talk about death. For those who are willing to ask themselves, and each other, nuanced questions and grapple with meaning and mortality.

We return to our questions then: what does it mean to die well? Nature seems to know. And despite our collective refusal to think much about death, a few humans seem to have an idea as well.

We wanted to talk to some of those humans. So, we set out to explore the diverse considerations that surround death and dying, one conversation at a time.

The series of blog posts that follows, will invite you to participate in these conversations, to draw wisdom from them and do your own reflecting, and to listen in on the insights of folx in palliative care.

You’ll get to hear from an array of experts who navigate the delicate landscapes of end-of-life experiences, and extend the dialogue in your own classrooms. Each blog will finish with reflection questions designed to help the nourishment of these insights seep in.

Wildword Wordsmiths aims to equip students, teachers, and parents with tools to have conversations that matter. Our work bridges education, mental health, and personal growth, and draws from the wellspring of insight available from other experts along the way. In this journey, we traverse geographical boundaries, conversing with compassionate souls both locally and across the globe.

As a teacher and therapist committed to cultivating a more death-literate society, we’re delving into the experiences and insights of death professionals. That is, people whose work directly aids the dying.

Our ultimate goal is to shed light on death’s complexities, and foster a more compassionate and informed approach to life’s inevitable conclusion. Each interview serves as a beacon, illuminating the importance of death literacy and encouraging dialogue.

The intention of each interview is to draw from unique perspectives on death, life, and the significance of thinking and speaking about death in our communities. The conversations, enriched with reflection questions, invite you to partake in a dialogue that fosters connection and empathy.

The first expert we sit down with is Darrin Parkin. Darrin is a Spiritual Care Clinician at High River General Hospital, and an integral part of an interdisciplinary medical team that extends compassionate, patient-centric care across diverse healthcare settings. Previously, he was the Spiritual Care Coordinator with Hospice Calgary, contributing to the comforting environments of Rosedale Hospice and the SAGE Centre, as well as a consultant within the legal system, and the restorative justice arm of corrections.

Darrin is not only a practitioner but also a thought leader, having authored and developed an assessment tool to gauge patients’ experiences in the realms of peace, dignity, distress, and despair amid health crises, life-limiting diagnoses, or the aftermath of bereavement. Darrin has also shared his insights through educational sessions for organizations such as AHS, focusing on defining spirituality in our post-modern and post-religious society, particularly within public institutions like healthcare. His diverse background includes guiding convicted offenders, teaching law enforcement professionals, and engaging in humanitarian initiatives in Africa, showcasing a commitment to justice, healing, and resilience in the face of adversity. Join us as we delve into Darrin’s wealth of experiences and perspectives on death, spirituality, and compassionate care for the dying.

1. What’s your story – how did you find yourself in service to the dying?

I wanted to make a big career adjustment in 2012. I had been a prison chaplain for 13 years and in order to make the change I moved to the Calgary area and began as a spiritual care clinician with Hospice Calgary (Rosedale Hospice). 

I felt a little unsure at the beginning because hospice is the world’s highest form of gentle, compassionate, and person-centered care that exists, and worried because I spent a long time in a world of chaos and violence within the prison system and thought I might be a bit too jaded for end of life care.  However, I was welcomed immediately and in no time felt like I found what I was looking for in service to the dying.

2. What do you wish the general population knew about the work you do?

That the dying experience is not all about suffering, fear, depression, writhing in pain, or that the palliative clinical team is dour and depressing.  In the “work of dying” that is done by patients and their people, there are tears, laughter, celebration, mourning, grieving, storytelling with the clinical team, symptom management, as well as enormous love and gratitude.

Mostly, the general population does not want to interact with a team of clinicians like us in palliative care (for obvious reasons) and they would not know what we can do.  However, if you do happen to need us, then we are the best in the world at it.

3. What do you think is important for people to keep in mind when initiating and encouraging conversations about death? In other words…what factors contribute to meaningful end-of-life conversations?

Death is not primarily a “medical experience”.  It is fundamentally an emotional, spiritual, and existential experience that happens within the bonds of relationship and community.

Death is not like it is portrayed in film or movies where a gentle auburn glow of light fills the room and an alert person simply stops breathing.  Instead, while it certainly should be surrounded by love, hugs, and hand-holding, most people go unresponsive prior to death, the grieving family has begun the goodbye’s prior to death, and not all desires for closure, connection, apologies and not all forgivenesses happen.  Often people die similar to the manner in which they lived.

In practical terms, people should have conversations with their loved ones long before facing death to make their wishes known, their goals of care communicated, and some form of a life review done together with loved ones.  People should have their families aware of these things and things like wills, personal directives, etc done.

4. What do you see that needs to change about the healthcare system in Alberta in order to better serve those who are dying? On the flip side, what is being done well?

A million things could be said here. Things done well include phenomenal and compassionate nurses, HCA’s, physicians, as well as availability of opioids and other medications required to ease suffering with symptomatic disease trajectories.  There are health care people and systems in place that bend over backwards to accommodate the needs of the dying and their families.  This includes home care medical professionals who support people who can and wish to die at home.  People often say that these end of life care-givers are “angels”.

A change that would help is to hold up end of life and palliative care as the norm, the standard, or the model as to how all health care should be delivered with compassion, grace, and in placing the patient and family at the center of all care and compassion.  If we can “do death and dying” really well, we should then work backwards and let that be the measuring tool for all forms of health care at earlier stages of people’s lives.  This happens when health care professionals experience this kind of care firsthand by working in a palliative experience of health care delivery. Also, those of us in palliative care can be mentors and advocates to other professionals about what is possible. Those of us in death and dying are comfortable and excellent mentors of how to allow powerful emotions and grief be appropriate and expressed in health care settings.

For me as a prior experienced prison professional, I see little difference in how the two institutions are designed.

Lastly, we should re-imagine how we physically design spaces where healthcare is delivered.  What we have done is imagined and then designed the absolute worst possible aesthetic setting, with terrible and inadequate use of space, a laboratory like and clinically unappealing, overly medicalized antiseptic ambiance where no sane person would ever want to exist for short periods of time or certainly to live in for longer term care.  We also did not envision and design appropriate safe and therapeutic spaces for those of us in the psycho-social and psycho-spiritual roles to care for patients or their families.  This, in my opinion, is the biggest system flaw made at the beginning at the point of design that then informs how people in health care interact and care for the sick and the terminally dying people and their families.  As a result, human relationships and care relationships are far too antiseptic, clinical, and not easily comforting.  This began with poor physical design, which un-surprisingly gave us exactly what we designed for. 

I have a brief background in architectural design and with my many years in the prison system I learned one inviolable law of the universe: When you design physical space (everything from a home to an institution), you are always asking by your design for an exact outcome.  And as an outcome, you will always get exactly what you asked for.  If you build a supermax prison as ugly as hell with concrete and steel and no light of day for violent offenders, you will get exactly what you asked for from violent offenders; ugly hell and violence. 

If you build a hospital with a mentality of disease at the center rather than people at the center, then you will get exactly what you asked for; a sterile, clinical laboratory like interaction between humans.

It turns out that humans prefer a comfortable home like environment in which to engage with their health care team.  For the dying, not surprisingly, they like the smell of freshly baked cookies, fresh baked bread, happy hour when managers, chaplains and nurses bring a cart with beer, wine and cheese to enjoy together every Friday, music performances, and things like this.  Instead, we designed and built two identical institutions in many ways; hospitals and prisons.  One with violence at its center and the other with disease at its center.  We even serve the identical food menu.

5. Can you recall any last words from a dying patient that were particularly resonant?

Many come to mind here.  One patient who lingered for a long time with end stage cancer, said that she felt like she was straddling this world as well as the next and came back and forth with vivid memories.  She said that the next world was warm, colorful, had no judgment or anger, but was love itself.  She was frustrated by taking so long to die.

A more sobering and difficult thing a patient said to me was just after he told me that some of his grown children turned their backs from him years prior and had cut him out of their lives unfairly.  This was the day before his scheduled M.A.i.D. death.  When I asked about his grief , his response was “Oh well, it will all be over soon.”

6. Have you noticed any common themes in the way people approach death? How about exceptions?

A very common thing I have seen as people approach death is around the area of fear.  When asked about having any fears about death a lot of people assume that people fear what happens after death.  It is not true.  That is not what people fear.  I have only encountered one exception to this with a patient who had a rigorous religious faith.  That patient feared what might come after death because of what their religion taught.

People do not fear what comes after death, they fear the actual dying experience itself.  Will I suffer?  Will I not be able to breathe and feel like I am drowning?  What will my family see as I waste away?  What will my family do after I die?  Most people I see at the end of life face death with acceptance and boldness and are prepared to do the emotional work of dying if guided and given the chance to do that.

7. Beyond funerals, can you speak to any rituals or ceremonies that honour the death and dying process?

I have seen sweetgrass smudges together with family and friends.  Prayer services for religious patients.  Music sessions, etc.

One patient held a “celebration of life” service with her family and friends just prior to her MAiD provision.  There was a smudge, speeches, laughter, tears, champagne toasts, hugs, words of advice to the living, and “I love you’ s”.  Her death immediately followed this celebration.

8. What are your thoughts around MAID (medical assistance in dying)?

I have been very involved in MAiD since it was enacted as legal because our hospice was the first to allow it on-site.  Since then, I have done a lot of education for staff teams on MAiD and guided them through the provision.  And since it was made legal, I have and currently help navigate patient’s requests and processes for MAiD.  In supporting the patient, their grief and emotions as well as the family (and for our medical team), I am usually present for MAiD provisions in my hospital.

I think MAiD, if properly offered and guided as it has been within AHS (they have done an excellent job with the process), is a fundamental aspect of respecting what people feel is important for their final wishes in light of terminal illness.  I believe the checks and balances have been well thought through and it is generally conducted with respect, dignity, and with a desire to honour a patient’s wishes by our medical community. 

I think by it being legal for those who are eligible, it corrects an historic flaw that human societies have made which is to be “paternal” towards those we care for by offering and telling them what “WE know is best for them” instead of what THEY feel is best for them.  For the appropriate conditions and diagnoses, MAiD offers to those who qualify for it a recognition of their autonomy as a human being in light of the suffering that they acknowledge and experience.  Therefore, I disagree with those in the palliative community who say “MAiD is NOT a part of palliative care”.  Many of these people are people I look up to and respect enormously, but I disagree with them on this matter because patients already in our care for palliation will often then request MAiD.  What should we do then? Discharge them because we believe “MAiD is not a part of palliative care”?

9. What does it mean to you to “die well”?

I am actually not sure how to answer this.  From a clinical point of view, I can say that to die well means we have and are utilizing everything within our medical and psych-spiritual tool kits to manage symptoms such as pain, nausea, shortness of breath, psych-spiritual distress, etc. for our patients.

For the people doing the actual dying, I am unsure what dying well means.  Perhaps it is dying with acceptance, with grace and love, with as much closure in relationships that is possible, with satisfaction in their hearts that they have lived a good life and things like these.  However, these things are usually seen from our point of view rather than theirs. Is it possible that we say that the patient died well 100%, but in their dying soul perhaps they believed they were dying 65% well…  Who can actually know?

If all of the beautiful aspects of closure and emotional satisfaction do not happen for a patient does that mean we should say that they did not die well?  Perhaps for some, dying well means holding “the incompletes”, and the “unfinished business” in their hearts as a gift to the people they love as they die without them or without closure between them.  Maybe for some people dying with some form of emotional anguish has value and means that they care and are paying the “price of love” and for them it means they are dying well.  Ultimately, I don’t think we can ever know what dying well means from the point of view of the dying because they are no longer here to tell us that they died well and I don’t believe we should answer for them. 

Meanwhile, from our point of view, all we have is to say from a care and symptom management point of view that they died well from our care point of view.  But the caveat to this is we still do not ultimately know.  I think I can only answer this question by what it would mean for me with my own death and that would include being satisfied with the things that are important to me when it all comes to an end.

Strangely, we often will agree with family members after the moments of death that their person “died well”.  But ultimately, I don’t really know that we can ever objectively know what that means because it was not my own death.

10. How do you perceive the existing gaps between rural and urban palliative care, and what measures do you believe can be taken to bridge these disparities, ensuring equitable access and quality of care for individuals facing end-of-life situations in both settings?

Urban Palliative care in Calgary is outstanding.  If memory serves me correct the Calgary zone has approximately 116 Hospice & Palliative beds.  That is between the seven hospices in the Calgary zone (which includes the rural Okotoks Hospice) and it includes the Integrated Palliative Care Unit (IPCU) at Foothills Hospital.  These seven hospices and the IPCU unit are actually the highest per capita number of palliative beds in Canada.  So Urban Calgary, and increasingly urban Edmonton are doing well in terms of access to palliative beds.  In addition, the urban and rural hospitals and acute care units often reserve a small number of rooms specifically for end of life palliative care.

With rural palliative care it is an entirely different scenario and access to good palliative care settings is always a topic of discussion and frustration.  I know of several rural hospice societies throughout Alberta with lots of money raised as well as even land donated in order to build a free-standing hospice for palliative care (Rosedale is an example of a free-standing hospice).  These societies have not received AHS government approval for a contract to provide end of life care and so do not have a hospice.  That means that for rural Albertans to get a hospice bed they would have to travel to the nearest city (Edmonton, Red Deer, Calgary and soon to be Lethbridge) to get a “hospice” bed for palliative care.  Imagine an elderly person who has to travel over 100km on a daily basis to visit their dying loved one (winter included).

Alternatively to in-patient hospice, those rural folks usually die at home or if they need advanced round the clock care they go to the nearest acute care setting (Hospital or Long Term Care Centre) for Palliative care.  These places sometimes lack the established physician experience in Palliative care (and daily access to that physician care), or more often lack adequate room space for patient and family for a two to three month end of life experience.  In some cases in these rural care settings there can be a reluctance or lack of experience to utilize the full scope of end of life symptom managing medications such as opioids.  Experienced Palliative physicians and nurses know well that in the face of difficult end of life symptoms of suffering it is normal to “throw the book at it” and not be afraid to fully utilize opioids and / or sedating medications to ease suffering. 

There are rural “palliative consult” nurses and physicians that can be called upon for a consult and good palliative treatment options, but it is not always common for these places to invite the palliative consult team.  This is a big mistake in my opinion.  A good physician or nurse clinician guiding the care of a dying patient should never let ego prevent them from a consult expert coming in to provide options that utilize medications to manage symptoms if it happens to be outside that clinician’s normative experience.

With regards to access to freestanding hospices, in my opinion, we simply cannot build freestanding hospices near or in the towns near every Albertan in order to have as fair access as those in urban centers.  While I have great respect and support for my friends in rural hospice societies trying to build one, It is simply not financially possible for any government in any jurisdiction to accomplish even when most of these hospices are not for profit societies in partnerships with government health authorities and funded to operate at a lower cost than government owned hospital and end of life facilities. Instead, I think those of us with experienced hands-on embedded clinical hospice and Palliative Care experience should go to the acute care, hospital, and Long term Care Centers to inspire, lead, mentor, and help shape a good hospice and palliative care experience for all who come.  In reality, if we put it in terms of the phrase “the Upper 1%” of the world’s population that have first world wealth, then it is only the 1% of the 1% that actually have easy access to world class hospice and palliative care and this only in first world countries that have universal health care. The math is simply not there for everyone to have equal access to a place like Rosedale Hospice in Calgary or Pilgrims Hospice in Edmonton.

Therefore, it seems we have to embed hospice and good palliative care practice in all the other settings that people can actually easily reach and in the places that they die.  Also, many people will choose to die at home if the care needs are possible there.  So good palliative home care people are essential to bring good palliative care to people at home and “embed” hospice in their homes.

11. Do you think death should move back home from the hospital? Do you see a negative impact of the medicalization of death?

In an ideal world all death from terminal illness should occur at home where people are comfortable surrounded by the things and people they love and are familiar with.  (Canadians have been polled and said they prefer to die at home). 

If a patient comes to any acute care and hospital environment for end of life then it is true that it is an overly medicalized environment.  I am always doing education sessions for our nursing staff emphasizing that we must remember that we have hospital architecture working hard against us for good end of life care.  There are too many beeps, machines, sounds, devices and antiseptic thinking that feels nothing like home.  Hospices design better for sure, but not every Albertan lives near the urban centers with hospices.  Home is the best place for almost every human being if asked.  So yes, the “medicalization of death” is our enemy!  We have to fight it everywhere and undo its hideous deformity of true care and compassion.

However, home is only realistic to the point that infrequent home-care nursing is possible when terminally ill people get frail and have symptoms changing as well as a lack of mobility.  Inevitably, people will often need advanced round the clock care that family and home-care cannot provide.  They will need admission.  And the reality is for many Albertans this means a hospital or Long Term Care center where palliative care is not the norm or where there exists a “palliative room or small unit”.  Somehow, we have to make death in an acute setting look as closely to what it would in a free-standing hospice.  That is a significant part of my work in the hospital.

Drawing from Darrin’s insights, we gleaned an understanding of death as an experience that transcends physical and medical boundaries to encompass emotional, spiritual, and existential dimensions. He emphasized the importance of recognizing death as an intimate, relational process. Darrin’s observations challenge common conceptions about death, and invite us to be with moments of laughter, celebration, anticipation and deep honouring that can be a part of this process.

Now its your turn. Imagine Darrin turning to you, and patting a couch cushion for you to join in the conversation. What do you think?

• Reflect on your perceptions of death: Consider Darrin’s insight that death is not primarily a medical or even simply physical experience, but a deeply emotional and existential one. Does this align with your perspective, or challenge it?
• Explore the concept of “dying well”: Darrin offered his thoughts, and even tried to get inside the perspective of the dying. How do you envision a meaningful and fulfilling end-of-life experience, for yourself or someone you loved?
• Contemplate the role of place in end-of-life care: Darrin highlighted the impact that physical space has on the experience of dying. What do you think about dying at home vs in an institution? What do you think that hospices, hospitals and care settings could prioritize in order to promote dignity and humanity in a person’s final days?
• Sit with your own assumptions: What is your reaction to MAiD? Is there anything challenging for you here? How do you understand this decision, and what are the circumstances under which medically-assisted death makes sense to you, or doesn’t?
• Query the significance of death literacy: Reflect on your own level of comfort and familiarity with discussions about death. How would you rate your death-talk-comfort-level on a scale of 1-10? Do you think speaking openly about death, matters? What are you present to right now, inside your own body as we talk about this (emotions, sensations, thoughts or inner dialogue)? Are there any parts of you that are activated? Or perhaps numb? Something else?