Hospice Is A Philosophy Of Care, Not A Company

I was able to spend several years as a hospice chaplain before entering my current role as a hospice bereavement counselor. I am a bereavement counselor for a hospice. Most of the people I speak with have lost loved ones who used our hospice services. And even after all of that, many people are still unsure of what “Hospice” is and is not.

Hospice is philosophy of care for end of life.

Despite the common misperception, hospice is not a specific company. Hospice is a philosophy of care for end of life. The Banner Hospice website says:

“Hospice is a philosophy of care that provides specialized health care for people nearing the end of their life. If you have a terminal illness or, have decided not to pursue further curative care, and want to focus on comfort and quality of life, hospice care may be right for you. Banner Hospice provides symptom management with a focus on dignity, as well as support services for you and your family.”

The term “hospice” stems back to medieval times when it described a place of shelter and rest for weary or sick travelers on long journeys. Along the way, the term came to refer to humane and compassionate care given to people in the final phases of a terminal illness (given in a variety of settings; homes; hospitals; care facilities).

In 1967, Dr. Cicely Saunders founded St. Christopher’s Hospice in England; the first of its kind specifically to focus attention on the care of terminally ill persons and their families. Among the first staff at St. Christopher’s was an American nurse named Florence Wald, who brought Saunders’ philosophies back to the United States to become the founder of the hospice movement in the United States.

In 1971 Robert Twycross was appointed as a Clinical Research Fellow by Saunders. During his tenure there, his studies on the effectiveness of morphine, diamorphine and methadone helped standardize and simplify the management of cancer pain.

The hospice movement gained momentum in the United States through the work of Elisabeth Kübler-Ross and the founding of the first Hospice Home Care Program on New Haven, CT in 1974.

In 1986, Congress made permanent the Medicare Hospice Benefit and the various States were allowed to decide whether they wanted to include hospice in their Medicaid programs. According to the latest statistics available from the Hospice Association of America and the National Hospice and Palliative Care Organization: More than 5,300 hospices participate in the Medicare program in the U.S.

Hospice is a philosophy of caring for dying patients and their families that recognizes that death is a part of the life cycle and that every person has the right to die with dignity, peace, and comfort. Hospice is a “not a place; it is a concept of care for those who have life-terminating illnesses. Even if medicine cannot provide a cure, hospice can offer comfort, care, and assistance, to help maintain quality of life, even if we can’t lengthen quantity of days. Hospice affirms life and neither postpones nor hastens death; (though treatment for the primary diagnosis does stop) it exists so that patients and their families might be free to attain a measure of mental and spiritual readiness for death that is satisfactory to them.

If that’s hospice, what is palliative care?

Palliative care is an interdisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. It focuses on providing relief from the symptoms, pain, physical stress, and mental stress at any stage of illness.

All hospice care is palliative care but not all palliative care is hospice care.

“Palliative care” can begin at diagnosis, and/or at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness. In other words, there must be a terminal diagnosis for hospice care to begin. Hospice care includes elements of palliative care but its design is to allow the dying process to be as comfortable as possible.

Hospice is end-of-life care for your loved one.

I am privileged to work in Hospice. I get to walk alongside families during what is perhaps the most difficult time of their lives. It is something I believe in deeply and wish more people understood and embraced.

The Complicated Grief of COVID

I have served in the hospice world for a while now; first as a Hospice Chaplain, then as a Chaplain, Bereavement Coordinator, and Volunteer Coordinator all at the same time before stepping in to my current role as a Bereavement Counselor late last yer.

Throughout it all, I have tried to maintain a tender skin and tough skin. I get to walk alongside strangers in their toughest moments, but as a Bereavement Counselor, my role is only “interventionist”. I am a Bereavement Counselor. My role is to help people through the immediacy of Bereavement. That includes Grief counseling, which I do a lot of, but that not is my primary role. Let me explain how understanding the nuances between grief, bereavement, and mourning can help us help others through the complicated grief of Quarantine.

Grief is the natural reaction to any significant loss or change. Most often it is something/someone meaningful in our lives (though not necessarily that we love).

Complicated Grief is grief that does not resolve in a healthy way or time-frame. This can include grief long after the loss, but it can also include “complications” in the grieving process itself. The Complicated Grief website compares complicated grief to getting an infection after a wound:

“You can think of healing after loss as analogous to healing after a physical wound. The loss, like the injury, triggers a pain response which can be very strong. Injuries also activate a healing process. Loss does too. However, a wound complication, like an infection, can interfere with healing. So, too, maladaptive thoughts, dysfunctional behaviors or inadequate emotion regulation can interfere with adaptation to loss.”

During most times, most people will not experience complicated grief and most will not even need a Grief Counselor or long-term counseling. But these are not most times, are they? We are in the middle of a global pandemic which has many not only quarantined but isolated and separated from common mourning practices. As if their loss were not enough to bear, COVID is complicating the grief many people experience.

Without getting too far in to the weeds with definitions, I want to offer this quick outline of ideas:

Bereavement is the act of losing someone/something we have relationship with or attachment to (not necessarily that we love).

Grief is the natural reaction to any significant loss or change (often including conflicting emotions).

Mourning is the outlet we try to give to our grief. This includes family/religious/cultural memorials and events like funerals, wakes, or even informal things like reminiscing or even crying with others, etc.

As our culture has moved further and further away from a clearly delineated, cultural norm of mourning, grief has often become more complicated. Mourning is the outlet or process we try to give our grief. This often culminates in a memorial/funeral/graveside service, but can include things like mourners (people publicly displaying both their bereavement and grieving) may wear black or subdued colors. Public rituals like flying a flag at half-mast. Some people wear armbands. In some cultures, widows wear black for a long time following the death of a spouse. Some people get tattoos. Some will hold wakes. Some cultures will cut their hair. Some cultures will seclude the bereaved for a period of time. 

All of these are part of the mourning process. They are public displays that we are bereaved (separated from) and that we are grieving. And the fact that they occur publicly is important. After a significant loss, our world is shattered. And, for a time, we are “different” from everyone else. They don’t know what we’re going through. They may have lost someone but every grief is different. And as we learn to accept and incorporate our loss in emotionally healthy ways . . we close the casket . . . we throw the dirt . . . we cry together . . . we grieve and feel the pain of our loss and then, someday, gradually we wear black less often . . . we take the armband off . . . we return from seclusion. And we move back in to community (although this process often takes place with a community along every step); we are “restored.” And we have moved through our grief.

But COVID has shut down most large gatherings. Most people have cancelled or put put funerals on hold. Large memorial gatherings are prohibited. And for the safety of the community, many people are being forced in to complicated grief. In community, or with the appropriate cultural cues, most people grieve appropriately.

Bu without a formal mourning process, we often do not not know how to process our grief. Without the cultural landmarkers of things like “viewing,” “memorial”, “graveside service/burial”, we lose little but key perspectives of time and healing like: “it’s been a week since we all gathered together; remember when Aunt Dottie shared that story none of us had heard before, and remember how hard cousin Bill took it, I didn’t realize he would be affected so much . . . “

Isolation and lack of cultural cues has led to complicated grief for many people. Chances are, someone you know is hurting and processing some type of grief. And chances are, someone you know feels like they have to do it alone. Grief and grieving are things everyone will go through but no one talks about and no one teaches us how to do. Most of us muddle our way through it somehow, but many are trapped in isolation right now. It’s not that they’re not going to make it through, it’s just that it’s going to be more of a slog than it has to be. I don’t know that our culture has yet had time to consider the many ways COVID will affect generations to come.

So, if chances are that someone we know is processing grief alone, then the obvious answer is to love our neighbors and consider others better than ourselves. Pick up the phone. Send an e-mail. Send a hand-written letter. Send a care package. More than anything, let someone know you care. Memento Mori, friend; remember that we too will die. That shadow pushes us to share the light of hope of the Love of God.

Don’t offer advice. Don’t tell them you know what they’re going through (especially if you think you do). Don’t tell them “time heals all wounds” or that they “just need to get over it.” Don’t tell them no to cry. Do not say: “Well, at least you had all the good times” or: “Well, they’re in a better place now”. Do not give them a time-frame and do not judge someone else’s grief by your own experiences.

Listen.

Ask a few questions.

And listen.

That’s all you need to do.

“I’m just calling to check on you and see how you’re doing . . . “

“I hope you don’t me asking, but are you eating and sleeping OK?”

“Have you been able to have any public mourning event?"

“Do you have a support system in place; people you can share with?”

“Where do you find strength for times like this?”

Let the griever guide. You’ve already shown that you care and that you’re willing to be whatever presence they need. If they need to talk, they will. And you’re willing to be present with someone in the midst of their isolation and ask simple questions like the one above and have the patience to listen, you’d likely be surprised how many seeds of hope we can spread.

COVID is having impacts we will not understand for years. I wonder how many people’s complicated grief might lead to other issues down the line and what we can do about it.

Let’s all be good neighbors. We’re all hurting.

Who needs to hear from you today?

The Grief Playlist: Learning To Practice Emotional Situational Awareness

Grief is universal and universally unique. It is something we will all experience and we will all experience differently. No one grieves the same even though there are some things that a Bereavement Counselor often sees.

One common experience I see is that when someone is experiencing the grief of losing a loved one to death (particularly a traumatic, painful or unexpected death), they will often (and often at the most inopportune times) find themselves re-living the most painful moments. They find themselves (often unwillingly) rehearsing mental images or replaying scenes or conversations and it just seems to come on like a fresh stab in the heart, making it impossible to “move on” like all their friends keep telling them to.

I am not a professional counselor. Nor do I claim to be. But I pastored for around 15 years, served as a Hospice Chaplain for over 3 years, and currently serve as a Bereavement Counselor and hospital Chaplain Intern. So this is a familiar conversation and a common question that I’ve come across over the years:

is it possible to change our thought patterns?

This question has primarily been in my mind lately with relation to helping bereaved people cope with unhealthy thought patterns in their grieving. But of course it applies to more than that. It applies not only to other types of grief but other unhealthy thought patterns as well and I’ve helped people use this technique in a variety of settings. Through conversation after conversation, I tried to develop a practical approach based on the simple but powerful proposition: we can change our thought patterns.

Of course different people will have different outcomes and/or levels of “success” and we must be honest that this is a difficult, slow process. This is not a promise that you’re going to be just terrific by tomorrow. But it is an approach that we can put in our toolboxes that I do believe is helpful for many. And it starts with driving (sort of).

I don’t know about you, but I’m the sort of Introverted person who likes to sort of live in my own thoughts. And, I am not advocating this at all, but I have this bad habit where sometimes I’ll get in my car, arrive at my destination and sort of jolt myself out of the fog; I don’t remember driving there. I just totally spaced out, wandering around in my own thoughts, perfecting the argument I should have made three days ago, etc., but certainly not engaged in the moment. 

This is exactly how many of us go through life. We are passive and usually re-active when something happens rather than pro-active. We sort of sleep-walk through life. We go about our business, we numb ourselves with our shows or drink or gardening or whatever, until it’s time to go to sleep. Not only does it seem like many of of “sleepwalk” through life, it seems that many of us take active measures to keep our brains “asleep” and disengaged. Because being “present” in the moment means dealing with things.

But our subconscious is not passive. Nor is it quiet.

So, back to those people struggling with traumatic grief experiences (or whatever unhealthy thought patterns your brain likes to randomly insert into your days). At times, it can be silly things like a commercial jingle, as demonstrated in Pixar’s Inside Out:

But other times, it’s those traumatic memories of our loved one’s suffering and our loss and the things we wish we hadn’t said and the things we wish we had done differently. Whatever it may be, the feeling remains that we will never break the cycle.

One helpful way I’ve come to think about this process is that the subconscious mind has certain “playlists” it likes to blare in to the mind. Sometimes we may understand why the mind “pressed play,” something triggered it that we can identify, that song, or smell, or the way the light hits the bank building in the evening, while others it will be like a Jack In The Box we didn’t know was wound up waiting to burst. 

One of my favorite playlists is one called Daily Driver. I listen to it . . . while driving around, daily. I’m currently on volume 04 of this playlist, which I started early last Summer. This playlist has kept a few of the original songs on it, like Creedence Clearwater Revival’s version of “Heard It Through the Grapevine” and the Rolling Stones’ “Can’t You Hear Me Knocking,” but lots of other songs have come and gone. In other words, I have, as the mood struck, removed and replaced songs. Some have been removed and then replaced again like “On The Road Again” by Canned Heat. 

I know that we’re trying to simplify a lot of neurons and chemistry and biochemical things and years of thought patterns and I definitely don’t want to oversimplify, but it has helped me to think of my thought patterns like my Daily Driver mix (Listen to Volume 01 here and Volume 02 here). Yes, it’s what comes on when I get in the car but I can change it. I can keep parts or get rid of parts. I can switch the order. But this takes learning and practicing what I call “Emotional Situational Awareness”©.

One common theme among various faith traditions is the idea of “living in the moment.” Some traditions teach about the pursuit of Zen in the moment, which is more of an ongoing inner-peace, but nonetheless requires real-time awareness. 

“When asked ‘What is Zen?’ a Zen Master replied, ‘Your ordinary, everyday life.” This is as good a place to start as any. Zen, like life, defies exact definition, but its essence is the experience, moment by moment, of our own existence - a natural, spontaneous encounter unclouded by the suppositions and expectations that come between us and reality. It is, if you like, a pairing down of life until we see it as it really is, free from our illusions; it is a mental divestment of ourselves until we recognize our own true nature.”

Others teach about “taking every thought captive,”(2 Corinthians 10:5) and, at the risk of oversimplification, I think that these various faith traditions mean, at least in part: “wake up!” Practice situational awareness. Be present. Be alert. Engage and interact. It’s not a foreign concept to anyone who can play video games. Video games require something about being aware in the moment, but, for some reason, many of us do not live our lives in general this way, much less our emotional and spiritual lives.

The idea of situational awareness can apply not only to being aware of and engaged with our surroundings but can be applied to our internal lives as well. What if we learned to practice emotional situational awareness? In other words, what if we practiced cognitively being aware and engaged in the moment so that when those GRIEF PLAYLISTS pop up, we learn how to shuffle the playlist in the moment?

What if we learned to rehearse and insert different memories and mental pictures into that playlist, and, as a result, we were gradually able to change our emotional reactions to our memories? This is hard work and it is a slow process, but it is part of moving forward with life. This is part of what I mean by learning to practice Emotional Situational Awareness. Find some sort of metaphor/analogy that helps you quantify what happens with your thoughts. I love music and making playlists, so for me that’s an easy one. You might need to think of another analogy.

But like a good DJ can read and respond to the crowd, adjusting the mix “on the fly”, those who learn to practice emotional situational awareness can learn to “edit” their mental patterns in real time.

I have seen many people respond positively to this method and I’d love feedback, especially from those with more counseling experience than I have. What are your thoughts?

• Listen to/Download Volume 01 of my Daily Driver mixes.

• Listen to/Download Volume 02 of my Daily Driver mixes.

Grief: When You Come To This Trench, Swim Through It, Not Over It

You know the saying: “Nothing’s certain in life except death and taxes.” We are born to die and love away the days in-between. But if death is certain and we are born to love (and receive love), then grief is also certain, isn’t it? Grief is the natural reaction to any significant loss.

But this is counter-intuitive. It’s against everything we’ve been taught. We’ve been raised to pursue comfort. And grief is certainly not comfortable. So we try to avoid grief. We repress our emotions. We just try to get through it. We won’t let ourselves cry (especially in front of other people). And our society somehow equates doing any of these things as “giving in” and as weakness. So we try to avoid grief.

And we experience another loss.

Which now weighs on top of previous losses.

And the unresolved grief knots itself inside us.

You know the saying: “Just rip the band-aid off.” Just get through it. Some things just need to be faced. Though this is more blunt than I’d like to be, the sentiment remains. We will never completely “get over” grief, but it can get easier. And for that to happen, we must move through our grief.

There is a scene in Pixar’s Finding Nemo, in which Marlin and Dory ask directions from a school of John Ratzenberger fish and we find the following exchange:

School of Fish : “Oh and one more thing: when you come to this trench, swim through it, not over it.”

Dory : “Trench. Through it, not over. I'll remember. [swimming to catch up with Marlin].”

Dory : “Hey wait up there's something I gotta tell you. [sees the trench]”

Dory : “Woah. Nice trench.”

Of course they try to go over the trench. And Jellyfish Mayhem ensues. If you haven’t seen the movie, I highly recommend it. When we try to go around or over or under or avoid our grief, jellyfish mayhem does not occur. We become anxious, angry and/or depressed. We become stuck.

It seems counterintuitive, but the best way to deal with grief is to move through it. We need to allow our emotions to run their course. We need to let ourselves cry. The true strength is found in what the world considers to be weak. Pull out the photo albums. Watch the videos. Listen to the songs. Smell the smells. Eat the food. Visit the places. Because grief is evidence of love and it is a thing to be celebrated.

• Watch Finding Nemo at Amazon.

• Purchase The Grief Recovery Handbook at Amazon.

• Browse my previous posts about grief.

The Banner Hospice Dottie Kissinger Bereavement Camp

This past weekend I had the profound honor of serving at the Banner Hospice The Dottie Kissinger Bereavement Camp For Children in Payson, AZ and I want you to know about this valuable resource.

“The Dottie Kissinger Bereavement Camp is a free community program designed to help children cope with the loss of a loved one.

Children and parents participate in activities that inform, educate and provide opportunities to talk about very difficult aspects of loss. We have helped families who have experienced losses such as grandparents who died from an illness, or sudden accidental deaths of parents or siblings.

The camp is offered three times a year – just outside of Payson, Arizona and is open to the entire community. 

For more information, please call (480) 657-1167.” (from the website)

Watch some informational videos about what happens at these camps.

We have several resources if you are unsure about how to help a child you know through the grieving process. Please contact me or call (480) 657-1167 for more information.

Grief: What to Expect (the unexpected).

One of the beautifully mysterious, confounding, and yet comforting things about life is that everyone is different. And yet, how often we forget this. We marvel at snowflakes and ignore other people as though they weren’t walking miracles themselves. We inspect and catalog plant species, marveling at their differences while flattening out humanity into cardboard caricatures.

Though “Grief is the natural response to loss or change” and “the price we pay for love,” and everyone grieves, not everyone grieves the same. And grief is more than a simple emotional response to loss. It is a physiological reaction that may differ from person to person. Some people may want to sleep all the time while others won’t be able to sleep. Some will lose their appetites while others will find comfort in food. Some people will need silence and time alone to process while others will find it more helpful to be in crowds and around people. Some people will have guilt or anger while others have only sorrow. None of these is “right” or “wrong,” they are just the different ways people move through grief.

We need to stop trying to prescribe how everyone will do everything. For a religion that claims to be for people who don’t have it all together, Christians often try to pretend that we have it all together. And that we can tell everyone else how to do things. We hold financial seminars telling people how to deal with their money, we have conferences about parenting and marriage. But the truth of the matter is that cultural statistics, bankruptcies, divorces, etc. are not all that different for those who claim to be Christian and those who do not. I’m not saying God’s Word does not have helpful things to say about all of these topics, including grieving, but I am saying that we need to stop telling people how long or how they should grieve.

One of the questions I am most often asked is: How long will my grief last?

I don’t know. How long did you love that person? You will never forget them, so in a sense, grief never ends. I know most people don’t want to hear that; that grief never ends. But it does change. It will not always feel like we’re gasping for air in the belly of the best. But grieving is the process of admitting and accepting our loss and finding the “new normal.” Things go on. Even without the ones we love. There are still bills to pay, mouths to feed, yards, to mow, dishes to do. Only now, we must face them alone.

If grief truly is the price we pay for love, then grief is also the process of discovering life after loss. There will be tears, there will be sorrow, there will be loneliness, anger but there is also the simple process of being changed by our loss. Grief is the redefinition of who we are in relation to what we’ve lost.

If I’m saying anything at all (and believe me, there is much more that I want to say beyond this post), it’s that I would love to see the Church make more space for lament. I would love to see Christians move beyond prescribed 1,2,3 step programs for everything and I would love to see Christians move beyond trite-isms and embrace the grieving process as an essential part of life.

As with yesterday’s post, I very much would like discussion. What has your experience with grief been? How has it shaped you? What was helpful? What was not? What would you like others to know?

What Is Grief? And How Can I Learn To Be Thankful For It?

It has been said that the only sure things in life are death and taxes.

I think we should add grief to that list.

Live long enough and you will experience grief.

And yet, even though we will all experience grief, it is one of those things that no one likes to talk about, much less consider. As such, there is not always a consensus about what grief actually is. It’s troublesome that we don’t talk more openly about something we all face and it’s even more troublesome that many of us are unable to define such a common experience. One of the first things I do is just try to write out a couple of different perspectives. When I began counseling people through grief as a Hospice Chaplain, one of the first things I did was piece together some basic definitions and try to distill them down to as few words as possible:

Deep sorrow, sadness and a mix of other emotions, especially caused by someone’s death.

Grief is the conflicting feelings, possibly including relief resultant guilt, caused by the end of or change in something familiar.

Grief is the normal/natural emotional reaction to loss or change of any kind.

Grief is the natural response to loss or change.

Grief is the natural response to loss or change. This seems like a pretty fair and straightforward definition which also accounts for the fact that grief will not look the same for everyone.

I don’t know how you begin to think about such topics, but once I narrow down a definition into my own fewest words as possible, I like to look at other people’s words. I like to look at quotes. They’re like different sides of a prism. Since everyone is different and, no one grieves the same (though there will be similarities), understanding how other people process grief can help us process grief ourselves.

“Grief is never something you get over. You don't wake up one morning and say, 'I've conquered that; now I'm moving on.' It's something that walks beside you every day. And if you can learn how to manage it and honour the person that you miss, you can take something that is incredibly sad and have some form of positivity.” (Terry Irwin)

“You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.” (Anne Lamott)

“the way I think about grief is that it is the great tug-of-war, and sometimes the flag is on the side you don’t want it to be on. And sometimes the game has exhausted all of its joy, and all that’s left is you on your knees. But, today, even though I am sad, my hands are still on the rope.” (Hanif Abdurraqib)

“Every one can master a grief but he that has it.” - (William Shakespeare, Much Ado About Nothing)

“Grief is in two parts. The first is loss. The second is the remaking of life.” (Anne Roiphe)

“Grief is the price we pay for love.” (Queen Elizabeth II)

Every once in a while, you come across a quote that just stops you in your tracks. Grief is the price we pay for love.

Everyone wants love but no one wants to grieve. Grief is the price we pay for love. No one wants to think of love as a trade-off; and it’s not really, not in the strictest sense. But grief reminds us that we care. Grief reminds us that our feelings are alive and that, we are still in touch with life; with relationships; with thankfulness. Grief is proof that we are human.

Grief is the result of losing something that was important to us; a job, a spouse, a position in life, a loved one; whatever it is. Grief is the act of trying to adjust to the “new normal” after a loss. Grief is the process of moving on with life when we don’t want to.

It does not mean forgetting what we’ve lost.

It is far too common to hear people say things like: “You’ve just got to move on.” This is not helpful or true and I may explore why in future posts, but for now, let me just say that grief is one of those things that must not simply be faced but embraced in order to move forward. It must be passed through.

Of course it changes us, and that’s part of the point.

I hope to write more about the idea of grief and the process of recovery, but for now, I’d love your thoughts. Have you experienced grief? How would you define grief? How did you move through it (or did you?)? Did it change you? What did you learn?