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 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?