Sunday, December 23, 2012


Hope is a very powerful word. Many would say it is more important than other concrete things such as health, wealth, education or status.  Quite simply, with hope the human spirit soars, takes risks, and looks forward.   Without it comes despair, apathy, and overall loss of forward movement.

In the medical world, this word gets tossed around quite a bit. Even if the word isn't explicitly used, the messages we receive in health care are enveloped with hope.  Every therapy, test, or procedure is recommended on the hope that improved health is looming. Your doctor schedules a procedure in hopes of finding the problem.   He writes a prescription because he hopes it will fix the problem.  You follow the instructions because you hope it solves the problem.

Hope is so powerful, that health care providers have come to believe that at no time should they do anything or say anything to take away patients’ hope.  They will order medicines known to be of little benefit, or order a therapy that has minimal chance of working, just to keep hope alive.  

When asked about situations of giving these types of false hope, providers will state their reasoning is to avoid having the patient just give up and die. It begs the question; do providers feel that their words and recommendations alone have the ability to lead to life or death?

It is not just health care providers that believe this; many family members think this is true as well.  “Don’t tell mom that she’s on hospice, if she knew she’d probably give up and die”

The problem with these beliefs is that it assumes that the one true hope everyone has is to avoid death.  What families, physicians, and nurses imply by providing false hope is that by acknowledging that death is looming, it will somehow speed up the process. 

This is why it is so important to find out what the person is even hoping for.  You’d be surprised to know that death isn't usually the most frightening thing. In fact, most fear things like being a burden to others, or living in chronic pain, more than they fear death.  These individuals may say they hope for a quality filled life more than life itself.

The irony is that if the medical system reflexively orders more medications and more therapies in an effort to instill hope, for someone who actually hopes for quality over quantity, the system ends up falling prey to its biggest fear, because it now is destroying that individuals hope for quality of life.

The other assumption with false hope is a belief that people aren't strong enough to handle truth. I watch patients’ transition from hope for cure to hope for no suffering as death becomes inevitable.  It is done gracefully, without a dramatic giving up.   The few that have trouble are those who have been shrouded in a layer of false hope and weren't given enough time to adjust.

Hope is powerful; it never leaves, even at the end of life. The shift from hope for life at all cost, to hope for quality usually occurs much sooner than the medical world realizes.  Someday, I sure hope we realize that. 

Wednesday, December 19, 2012


When we talk about chronic life limiting diseases, there is a group of people that usually gets left out. So much of the attention is focused on the patient, the disease, or the medications, that this supporting role is simply ignored.  It is quite possibly the hardest job anyone will ever be asked to do, yet there is no financial compensation or societal reward given for the task.  In fact 2 out of every 3 people will at some point have this unpaid job.  This job is adult caregiving.

Caregivers have an enormous task.  They provide for the needs of people who cannot do so for themselves.   It’s more than just a meal, or helping someone dress.  Caregiving for someone with a chronic disease involves sorting medications and treating symptoms. It entails sleepless nights and cleaning up accidents.

To those unfamiliar with caring for an adult, this may remind you of caring for young children.  This is much more, though.  Add to the similar tasks of childrearing the emotional toll of having your spouse’s personality change, such that they now belittle or berate you or worse, don’t know you.  Add in the discomfort and invasiveness of having to bathe or change your own parent.  Or consider the physical strain of lifting a 200lb person out of their chair, all the while worrying they may fall on you. 

We aren't through, because now, you must remember that often the caregiver is also giving up something.  They may have their own family or children that they cannot spend time with, or they may have a job they must take a leave of absence from, or even school, or trips that cannot be taken.

Unfortunately, this sacrifice is often taken for granted or overlooked, and by ignoring this important job the caregiver becomes isolated, depressed, and their personal health suffers. 

What help can we offer caregivers?  To start, if you know someone who is a caregiver, offer them a break.  This can be as simple as a going over for coffee and letting them talk about their strain or volunteering to sit with their loved one to let them get out of the house.  Affirming their workload in anyway is helpful.

If the person being cared for qualifies for hospice, this may be a consideration, as one of hospice’s main benefits is directed at relieving the stress of caregiving.  Hospice provides a nurse or an aid to come into the home for a visit, or an actual 5 day respite where the patient leaves the home to allow the caregiver a chance to rest.

The most helpful advice is also the hardest.  Caregivers must learn to ask for and actually receive help offered.  There is tremendous guilt associated with caregiving.  Caregivers think it is a failure if they need help or must move their loved one out of the home. Isn't it a greater failure, though, if your own health is permanently lost at the cost of doing it all on your own?

Finally, let me publicly say, “Caregivers, you are amazing. Hang in there. You are doing a terrific job!”

Tuesday, October 9, 2012

Cancer as a War Annaology

There is one word in medicine that I can guarantee will strike fear when heard or thought about late at night: cancer.  I can also bet that there is a second word that is inextricably linked to that scary word: fight.

Have you ever thought about the symbols we adorn cancer with? He fought cancer, she battled cancer, he won the war on cancer, she's a survivor, he was so brave and didn't give up, and he beat cancer. 

No wonder the word cancer evokes fear, with phrases like that it sounds like a malicious enemy stalking us.  It also implies that our character has something to do with treatment, because who wins wars? The courageous and persistent warriors win.

I'm here to break it to you. Cancer is a disease, and just like heart disease, kidney disease, lung disease and liver disease, it can cause death.  There are also treatments for cancer, just like those other diseases, which can prolong life. However, your willingness, bravery and strength of character have little to do with those treatments.  We don't tell patients taking their hypertension meds, "You are doing great on your war against hypertension!" Or that patient with COPD, "Every time you use your inhaler you are battling lung disease!"

We don't use war analogies for other diseases because we know we can't separate out the disease as bad, and ourselves as good.  Yet, we do this for cancer, by naming it an enemy.  This immediately makes cancer much more personal and raises the stakes of fighting it, to a moral obligation.

Here is the harm that making cancer a war analogy does: To the patient with stage 4 cancer that cannot be cured, they are now a failure. To the patient who chooses not to undergo chemotherapy that may diminish his quality of life, they are now a coward. To the patient who has tried to overcome cancer with various therapies but is now exhausted and wants to quit, they now feel guilty for letting their family and doctors down.

When cancer becomes a battle, then anything outside of a cure becomes a failure, and with failure comes guilt, shame, and anger.  It's hard enough dying with cancer without those added emotions. 

I know many of your loved ones, or you yourself, have survived cancer or are currently in treatment. Please know that your victory is meaningful and by all means continue treatment if it is helpful.  However, we should equally praise those who daily battle diabetes and obesity.  To those who struggle with depression or overcome smoking addictions, we should call you survivors too.  In other words, let’s celebrate life and mourn death equally, no matter the cause.

To those who cannot be cured or chose quality of life over longevity, let's give them permission to do so. Let us be the first to remind them that usually it takes more courage to face a disease realistically than it does with a metaphor.  And most importantly, if hospice is involved, it doesn't mean that a battle was lost, only that the focus changed from treating an “enemy” to treating oneself. 

Wednesday, September 5, 2012

Goals Based Decision Making

We face decisions every day;  minute things, like which cereal to eat in the morning, to the extremely complex, like is it time to encourage our parents to move into an assisted living facility? Depending on the ramifications of our choices, the amount of stress these decisions carry certainly varies.

One way to reduce angst associated with decision making is to step back and use a technique called goals based decision making. This term has become associated with hospice and palliative medicine because it runs countercultural to the way modern medicine tends to make decisions.

The idea is simple; instead of focusing on the immediate crisis, think ahead to what the objective is. We actually do this all the time.  Do we have a lot of activities today and our goal is to have energy? Then we choose a breakfast with more protein than simple sugars.  Are we meeting a new client that we hope to sign a contract with at work? Then we choose our more professional vs. casual clothes.  Those choices all involve a quick determination of goals. 

We do this for big decisions as well. When we decide where we’ll rent or buy a house, we don’t just consider the immediate crisis of needing a place to live, we think of the future and the purpose of this living structure. Does it need a certain number of bedrooms? Is the location important? How much work do we want to put into fixing it up? All of these are questions about where we’re headed.

It seems so simple, and yet when we enter the complex world of healthcare things change.  A specialist says you need to be on a medicine for your heart, because your numbers are high. Unfortunately this medicine also causes you to be in the bathroom 10x every morning, so you avoid leaving your house and are now napping more in the afternoons.  No one thought to ask about the goals. Is it more important to you to have those good numbers for your heart? Or is your goal to have energy and be out interacting with your community?  In medicine the default is to fix the problem, not to find out what you’re hoping for.

The issue with only focusing on the disease is the narrowness of that vision.  When I meet patients who are on 30 different medicines, with timers and schedules, pill boxes and post-it notes, I find they are lost in the regimen.  Life has become about managing the pills, which in turn makes the numbers look good.  These patients don’t say to me, “My goal in life is to have the best blood pressure and best cholesterol of anyone I know.”   Usually their goal is living life with quality, meaning and minimal burden. 

When you have goals the decisions become easy. If the most important thing for you is to live independently, and you are diagnosed with something that makes that goal impossible, then the choices about medications and procedures that would place you in a nursing home should be denied.  Unfortunately it’s up to you to speak out. The healthcare system is designed to fix diseases and avoid death, period. As to where you’re headed, that’s up to you. 

The Truth about CPR

I’m sure you’ve seen it on a medical television show; a person in the emergency room loses consciousness, and a swarm of nurses and doctors rush around yelling “Code Blue”. Someone pushes on the person’s chest, oxygen and medicine are administered, and in minutes that person is back awake, apparently fine.

I honestly think this scenario is what people think about when they hear the word CPR, which stands for cardiopulmonary resuscitation. Unfortunately this image is skewed.

Originally known as closed chest massage, the technique was first described by surgeons in the 1950’s and used exclusively for patients whose heart stopped during surgery.  Later resuscitation breathing was added and in 1963 the term CPR was adopted.  

Over the last 50 years we have recorded data on how good CPR is at restoring blood flow, and more importantly in allowing an individual to keep living. It is interesting to note, that despite all of the medical advances over the last half century, the actual rates of survival from CPR have not changed. 

The number we care about most is how many people are able to leave the hospital alive after needing CPR.  That number remains at about 15%.  In other words less than 2 people of every 10 that undergo CPR will leave the hospital alive. 

I find this more troubling: If you are already in the hospital for a different reason, and your heart stops, but it is not witnessed when it happens, then the chances of you leaving the hospital alive are only 1%.  In fact, one study showed that if CPR was attempted on someone with a terminal illness in the hospital, that 0% survived the effort.

Why am I listing such negative statistics? In attempts to give accurate information on an intervention that most of us assume is always lifesaving. CPR does save some people, especially if they are healthy and have an unexpected heart attack or arrhythmia.  However, in people with cancer, or who are already seriously ill, CPR is often not helpful. In fact, CPR in those situations can be harmful, in that the procedure itself can break ribs, cause pain and be traumatic for families to witness.

This decision on whether to do CPR or not is known as someone’s code status. Perhaps you’ve heard the terms full code or DNR (Do not resuscitate), these phrases are the declaration of what someone wishes for themselves when they enter a medical facility.  These terms are something you should consider telling people around you, so that they can speak up for you, when you cannot.

Another way to look at the code status discussion is to think of it as a question on how you want to die.  Since the chance, when already ill, of surviving CPR is almost nil, the question is, when my heart stops do I want to die naturally, focusing on comfort with family hovering, or do I want to die in chaos, focusing on chemicals and numbers, with a medical team hovering?

Consider this in closing. I’ve never met a family who has wished their loved one could have had CPR as they died, but I’ve had many families lament with regret that CPR was performed. 

Mystery of the Timing of Death

As physicians, we are trained to be comfortable with things that are predictable. If your blood pressure is elevated, we bring it down. If you have an infection, we give you a medicine to eradicate the infection.  Unfortunately, not many things in medicine are quite so simple.  Of all the unpredictable processes our bodies go through, the hardest to predict seems to be the timing of our birth and the timing of our death.

This is not a column on obstetrics, so I won’t discuss birth, but the parallels to dying cannot be avoided. Mother’s agonize their last weeks of pregnancy, and family members plead with the physician for clues on when the baby will be born.  The truth is, no physician can predict when labor will begin. The same is true with dying. The final days and weeks can be agonizing as families anticipate and plead for predictions on when the event might occur.

This mysterious time for some rushes by in just a day or two and for others lingers for weeks. Do we have any control over the timing? Based on my own experience watching hundreds of patients go through this, I think that we may.  

The things that prolong dying are intuitive; that person isn’t ready to die. This refusal may be for many reasons. They may be fearful of the process itself, or what may or may not come after death. If someone is afraid to die, their spirit will fight it and what should take days, takes weeks instead.

Sometimes prolonged dying occurs because there is unfinished business that needs done. That business may be as simple as waiting for wheat to be harvested, as and elderly patient of mine did, or complex, like Mrs. O who waited to offer forgiveness to her son who was escorted in shackles from prison to her bedside before her death. Sometimes we don’t even know what unresolved business is prolonging the dying, but it’s a reason that person refuses to go.

People with a very new diagnosis or short prognosis are another group that tends to have a prolonged death.  They haven’t had time to wrap their mind around their disease, thus a part of them refuses to give into death, prolonging the process.

Finally, mothers, especially young mothers often refuse to die. Their inner drive to exist has shown me some of the most prolonged deaths. If anyone doubts that we have some control in the timing of this, I’d point you to a myriad of stories of moms with cancer, like E. who lay in a semi conscious state for over a month with nothing to eat or drink, withholding death by sheer will alone.

It is for these very reasons, that hospice refuses to interfere with the timing of death by using medications to hasten the process. It may seem contrary, but we must respect our patient’s wills, even if it is their own will that is prolonging their death. 

Whether you believe we have a choice or not in the timing of our death, the most predictable truth is that the timing of death is the ultimate unpredictable process. 

Volunteerism in Hospice

We’ve all seen it happen.  A crisis occurs, or a need is known and individuals get together donating time and money and more quickly than any program could be established the need is met or problem is solved.  Committed volunteers have the ability to make incredible change.

Many don’t realize that it was volunteers who actually started the hospice movement we know today.  In the 1970’s when the first organized hospices formed, there was no compensation within insurance companies for those services.  For over a decade it was simply nurses, doctors, counselors, therapists and community members, etc who volunteered their time to care for dying patients and grieving families.

When the government decided to officially make hospice a part of the Medicare benefit in 1982, they didn’t want to take away the origins of volunteerism.  To remedy this, Medicare mandated that 5% of all patient care hours provided by paid staff, must be volunteer hours.  Simply put, for a 40 hour work week with 10 employees, the hospice must provide 20 hours a week of strictly volunteer time.

This mandate has essentially become one of the defining differences of hospice care. In communities like ours, it allows for a sense of ownership, as neighbors and church groups, businesses and organizations donate time to serve each other.

Hospice really couldn’t survive without volunteers.  Those required hours are filled with administration duties, visits in patient’s homes, running errands, baking cookies and playing the guitar.  It is the volunteers who serve as our creative wish fulfillers.  I was recently with a patient dying of cancer who had wanted to finish a quilt for her children, however her strength was ebbing and I felt she would run out of time.  With her permission, word was sent to our cadre of volunteers.  Within a day we had set up a quilting bee at the hospice house, where she, her family and our volunteers all worked to finish the quilt.

There are no age limits for volunteers. I’ve known high school students who’ve donated time as a requirement for school, and been so transformed by their service that even once in college, they came back in the summers just to stay involved.

It is no secret that our culture avoids death.  The avoidance can actually lead to a fear dying.  Some volunteers give their time, simply to learn more about death. Having a chance to see first hand how hospice supports the patient physically, psychologically and spiritually becomes a relief and anxieties are abated.

The most effective use of volunteers is when an organization can match the skills and gifts of those donating their time to the needs of the organization itself.  Because hospice care is essentially focused on helping people live life to its fullest, the needs are as broad and unique as humans themselves. I’ve never known a volunteer in hospice that we couldn’t use in some way. 

Volunteerism in hospice is a perfect blend; Volunteers would tell you that by helping people in such a vulnerable time of life, their own lives are changed, and frankly, we wouldn’t exist without our volunteers. 

Benefits of Bereavement

Bereavement is an unusual word. It’s not thrown around in daily conversation as much as the words grief and mourn are. This has a lot to do with the meaning of the word, which refers to the loss or deprivation of something or someone, but especially the loss of someone by death.

Notice that the definition doesn't say much about emotion or feelings. To be bereaved is literally the fact that the loss occurred. The emotions associated with the loss are those more familiar words like grief, anguish, distress, etc.
Bereavement is unavoidable after a loved one dies, because it simply acknowledges the situation. That does not mean, however, that all bereavement looks alike. In fact I think no two bereavements are exactly the same.

When Mrs. S lost her husband in his 50’s, she had just sent her youngest daughter to college and was now utterly alone. At the suggestion of a bereavement specialist, instead of going inward, she began taking dance, art, and design classes to keep her mind busy. In her grief she found a new niche as an interior designer, helping other people with loss transform their homes and heal. 

Mr. C had been married 60 years when his spouse died. He didn’t have the energy for anything new. He lost weight and became withdrawn. It appeared on the outside that he was willing himself to follow his beloved wife. Bereavement counseling started and Mr. C was able to see through the fog of his enormous loss to the children and grandchildren that still wanted to enjoy him for his remaining years.

When we talk about hospice, one of the treasures people forget about is bereavement support. For at least a year and often longer, hospice provides a specialist in bereavement to help families cope with the loss. This means someone from the outside is able to notice subtle red flags of complicated grief and can help get things turned around.

Sometimes, as for Mr. W whose death was peaceful at the age of 83, bereavement support was needed for a grandson who required help processing his first experience with death. Mr. W’s grandson later admitted, without the support from hospice, he would have relapsed into a drug addiction that he’d recently quit.

While it is true that death in the hospital and death at home without hospice can be peaceful and symptom free, it is also true that without hospice, there is no chance for bereavement support or follow up. Of course, families and church communities are often pivotal in supporting each other in times of loss, but bereavement support from hospice is that extra net, making sure no one falls through the cracks. Best of all, like all other hospice services, it doesn’t cost anything. By simply being on hospice, the entire family is entitled to bereavement support.

For some, this is the only reason that they considered hospice. They didn’t need hospice for medications, or home visits, however they worried about their loved ones, and wanted assurance the family would be supported after their death.

Decision Making at the End of Life

A unique thing about our medical system is the value we place on autonomy.  This is in contrast to the old system of paternalism which meant doctors made decisions based solely on their idea of what was best for patients.  The pendulum has swung, and now patients are considered to have the final say.

The idea of autonomy is extremely crucial in end of life decisions. This next story should illustrate that.

I took care of patient during my medical training that was on a ventilator in the intensive care unit. The elderly patient had a traumatic brain injury and was unconscious and stuck on the breathing machine.  Our team turned to the family for guidance on how to proceed.  The choices were to either remove the breathing tube or place a permanent tube into his neck so the ventilator machine would keep him alive, though unconscious, for the rest of his life.  Like most, the patient hadn’t talked to his family about his wishes in this situation.  The family was torn, passionately arguing both options. We had to respect autonomy and couldn’t make the decision for them. The family finally decided to put it to a vote. My patient’s life or death was left to a tally from folded scraps of paper with scribbled yes’s and no’s.

To prevent this from happening to you, there are a couple options to consider. The first is an advance directive, otherwise known as a living will. Think of this as a preemptive decision. Usually living wills are a list of things you don’t want to happen to you if a certain thing occurs.  For example, “If at any time I should have a terminal disease it is my desire that my dying not be prolonged by artificial nutrition.” These forms are sometimes in written paragraphs, and other times a check list of things wanted or not wanted. In Kansas this paper must be signed and dated by two unrelated witnesses.

There are criticisms of advance directives; the language at times is too narrow, so only in a very specific situation is the document honored. Location can also be a problem; often it is lost or locked up, so no one can find it to honor the previously made decisions.

The other option in decision making is choosing a surrogate. This is known as a DPOA or durable power of attorney. Choosing a surrogate places the responsibility on them if you are unable to communicate for yourself.  The hope is that you’ve either communicated your wishes with the surrogate, or they know you so well that you trust them to make good decisions for you when you cannot. Some people choose multiple DPOAs. There is no limit; however keep in mind that conflict can arise if the DPOAs have different opinions on your wishes.

If none of these are available, we will still seek family’s input if you cannot speak for yourself. The greatest gift then, is talking about your wishes with someone. That’s actually a good way to start, “You know when I am at the end, I wish…” Otherwise it may just be put to a vote. 

Monday, February 27, 2012

The Paradox in Death

I love paradoxes. Well, I should say I find them complex and intriguing; however I don’t relish living with one personally.  The idea that we as humans can live with self-contradicting sentiments does make us unique creatures. It also can make for some intense battles within us. In a specialty like palliative medicine I’ve had to learn to be not only familiar with, but also comfortable with paradox.

I suppose the more extreme the situation, the more extreme the paradox can be. Let’s face it then, what’s more extreme than life and death?  Thus some of the greatest inner struggles come in both patients and families at this time.

For patients, the paradox is usually about life and death itself. Someone will say, “I’m ready to go, I’m not afraid to die, I’ve lived a good life, etc.” But then this same person won’t want to get into their bed because they are afraid symbolically once in bed, they will have given up, and ultimately die.  This is a paradox, and it is self contradicting. They want to die; they don’t really want to die. This is the glorious thing about people; we can hold two completely opposite beliefs at the same time. However, by creating a paradox, there can be consequences. The consequences usually manifest physically in the form of anxiety or delirium, but also sometimes pain. When I see a surge of symptoms such as these, I am prompted to explore this issue.  Almost always, the patient has verbally declared their resolution to dying but hasn’t admitted there is an underlying resistance as well.

For families, while the paradox still involves life and death, it feels very different. Sitting and watching the slow irreversible process at hand, loved ones will feel a sudden wish for this to be over. The desire stems from not wanting to see their loved one suffer, but it still feels like a death wish. Contrast this to a strong feeling of not wanting their loved one to die and wishing for more time and a paradox is born. Equally strong and self contradicting these opposite sentiments usually evolve into guilt and confusion.  Guilt comes because the person acknowledges that they’ve hoped for their loved one to die quickly and this desire feels wrong, and confusion comes because this directly opposes the longing for them to stay alive. 

To both of these situations I’d say, “It is absolutely normal and expected to experience this paradox.” To the one dying, there is less to be done cognitively to ease the symptoms of the contradiction. Thus medication management through hospice becomes critical. To the family members, however, it is the acknowledgement of the ambivalence that is important. The treatment is not to take the paradox away. Our selfish part, wanting our loved ones to live and be with us will consistently fight the unselfish part that hopes our loved ones will escape any suffering and debility they are experiencing. The solution becomes learning to be content with the paradox. Some would even say that this is what peace is; being able to embrace paradox.

Tuesday, January 24, 2012

Palliative Sedation

I once had a patient enter a hospice house for an unusual reason.  I entered the room to meet my patient, an older gentleman with cancer, who sat in bed surrounded by his wife and adult children. When I asked him about why he’d been admitted to our hospice house, his answer took me completely off guard.

I expected to hear about a pain crisis or other symptom. Instead, he very frankly said, “I am here for you to give me an injection so that I’ll die today.”  I learned that the grown children had flown in from out of state for this proposed event. I assume they had watched a similar moment in a movie, and thought one could just enter a hospice facility and request death.

Needless to say, I did not honor his request, nor could I, as his request is known as euthanasia and is illegal in the United States.

Euthanasia, as practiced in the Netherlands is the termination of life by a physician, at the request of a patient. Oregon, Washington, and Montana allow for something different known as physician assisted suicide.  It is different because the patient administers their own medication, not the physician. This practice, where a doctor gives a prescription for medication intended to hasten death is illegal in Kansas.

For both of the above procedures, one of the stipulations is for there to be suffering in lieu of a terminal illness. So, as residents of Kansas, what can be done if extreme suffering occurs as death approaches? 

As a palliative care physician, whose chief task is the reduction of suffering, this is indeed an important question. Patients on hospice do have an option to alleviate suffering without directly causing death. This process is called palliative sedation.

In brief, palliative sedation is basically putting someone in a medically induced coma to relieve intractable suffering, similar to the unconsciousness one is in during surgery. Like surgery, this coma does not cause death. There are three conditions that must be met to initiate palliative sedation. One, there are no other alternative medications that can be used to treat the suffering. Two, the goal is to relieve suffering, not to shorten life. Three, and most importantly, the patient must already be near death. Palliative sedation is not for someone who has been diagnosed with cancer, has months to live, but doesn’t want to tolerate the physical decline. 

I will be honest; I have not yet had a patient who needed palliative sedation in my practice. Perhaps I just haven’t worked long enough, but I’d like to think that the reason is aggressive medication management of symptoms before a climax point of refractory suffering is reached. 

The key is that palliative sedation is an option. For some, just knowing that something can be done for profound suffering is reassuring. It’s also yet another reason to consider hospice, not just to have the option, but hopefully eliminate the need for sedation through aggressive symptom management.

As for my patient, after the initial disappointment, he went on to live several more months, and quality months at that!

The Complexity of Suffering

There are phrases uttered so frequently by family members holding vigil at the bedside of a loved one that I have begun to anticipate the words before they are even whispered.

Probably the most common words I hear are, “We just don’t want him suffer” or “I know she is suffering, can’t we do something?”

“Suffering” is tossed out so easily that the question becomes, what is suffering? It may be a deep rooted fear we have as humans, but what is it? 

My favorite definition comes from Eric Cassell, a physician who has written books on the topic. He says that “suffering occurs when an impending destruction of the person is perceived”.  This implies several things about suffering. First of all, it is personal. Suffering occurs to us individually. Second, the word destruction implies something beyond repair. In other words if I get a paper cut, I may have pain, but the cut is not devastating, it won’t cause suffering. Third, suffering often starts before the threat. It’s as if we are anticipating what ever it is that will cause the destruction. Finally, something doesn’t have to be tangible to cause suffering. Sometimes just the idea of it can cause pain.

I sat with Mr. H as his wife went through the dying process. She was in her 40’s with an aggressive cancer. He and their teenage children sat huddled around the bed as she slept. Her brow was peaceful, her breathing unlabored. She appeared in a deep sleep. As Mr. H stroked his wife’s hand the familiar words were uttered, “I just can’t take this anymore. She is suffering too much.”

Knowing now what the definition of suffering is, who would you say was actually suffering? The impending destruction or the anticipation of permanent separation and loss was being felt by Mr. H. It was he, who suffered. His wife was no longer even aware of her situation, thus unable to perceive what was soon to come.

This may be an epiphany, but much of the suffering surrounding the dying process is done by the family and not the patient. Often, like Mr. H, the family suffers in anticipation of loss. Other times, ironically, families suffer because they assume their loved one is suffering.

Remember though, that suffering requires awareness; someone must be able to consciously process all those perceived and real threats to self. During the active dying phase that awareness is usually gone. Suffering then rarely occurs to the patient those last hours and days.

As for other types of suffering prior to that transition, we can intervene medically. Physical symptoms of pain or breathing distress that potentially could cause suffering are easily treated.  Though more difficult, even the emotional suffering done as a patient anticipates their own death can be treated with medication.

To expect that hospice will treat suffering that occurs in a dying patient is obvious, but what is unrealized, is that hospice also treats suffering of family members.  The ultimate irony is that the common phrases I hear families mention about their loved ones are what alert me to the suffering of the family itself. 

The Stages of Dying

I have spent many moments at the bedside of people passing from the living to the non living. While there are unique aspects that accompany each individual’s journey, there are far more similarities.

Plenty have said to me, “No human knows the exact time of a person’s death”. That is an absolute truth. However, like a weatherman trained to look at data, also watching the sky for signs and then predicting when the rain will come, I too look at data and watch my patients, and predict when their time will come.

The first signs, weeks and months before, are very gradual. Tiredness and sleeping begin to increase. What used to be one nap a day turns into multiple naps; time asleep becomes more than time awake. Digestion slows, so inevitably someone begins to eat less. At first just smaller quantities, then ultimately, whole meals are skipped. Most people at this stage begin to turn inward. Outward conversations and relationships become less important. The person wants to be left alone and can be inpatient. All these signs can be confused with depression. But close examination or even a trial of anti-depressants will show this isn’t depression, but the way we humans prepare for death.

As we get closer to days and weeks, time itself becomes skewed. Days and nights get reversed, and a person jumps from memories, to dreams, to reality all in a matter of minutes.  This is the time that restlessness occurs. There is a feeling of needing to go somewhere or do something, but the person is unsure what that is. There are moments when the eyes are open, but seem to be looking through everyone in the room. This mixture of distorted time and delirium can be very tough for families. We refer to this time as the transition, as the body moves from shutting down to active dying.

Once the transition is complete, now with only hours to days remaining, the physical body declares itself. Usually the person is no longer able to respond; blood pressure drops and the kidneys fail, skin is cool and sometimes a blotchy purple blue color.  The body can no longer control temperature, so innately the temperature spikes into the 100’s. Because the person isn’t able to swallow, and yet the body still makes saliva, a moist breathing sound is heard. Long pauses in breathing initially noticed days before change to very shallow, rapid breaths.

The actual moment when physical life stops comes quickly; like an engine running out of gasoline the breathing pattern rate begins to stutter. Finally there are empty breaths, like sighs, as the flicker of life goes out.

I write this for three reasons. First, to say what death is not. It is not suffocation and it is not sudden pain. Second, as a reminder that there are those, like me, who have knowledge and tools to help.  Finally, I want to empower you.  At some point there will be someone in your life in these stages. While each human experience is unique, there are far more similarities.

Death as a Process

When someone dies, it is not uncommon to spend time thinking back to the process that led to the event. More often than not, the actual process of dying began months before that person took their last breath.

This process of subtle changes is crucial to recognize, as it allows for early intervention with hospice services.  Early hospice enrollment is important because is means better quality of living and often longer life.

Unfortunately, there isn’t much emphasis in the medical world to look for signs of dying. Death so often can seem like defeat that no one wants to acknowledge it, let alone to actually go looking for it. The irony is, once acknowledged, it doesn’t lead to defeat, but gentle acceptance; which in turn leads to a focus on living ones remaining life to its fullest.

The other key is to understand that death is not just a moment. Today’s advanced medications, therapies and interventions have led to the ability to control and extend chronic diseases. While this is wonderful, there is still a time when the body begins to fail despite our interventions. This change is often missed as we mask the inevitable by adding one more pill or doing one more procedure.

The biggest clue that dying has in fact begun involves medical crises. When Mrs. C had her first heart surgery, the recovery was tough, but she did very well. She was able to get back to volunteering regularly and enjoyed spending time with her grandchildren.  Her second medical crisis, 8 years later, however was not as smooth.

This time after surgery she had complications. These did resolve, but she never quite regained her previous strength. Two months later, another problem arose, this time with her kidneys. Treatments were aggressive and eventually her numbers looked good, but she had lost a bit more strength. Over the next several months, setback after setback occurred. She began a revolving cycle of time in the hospital, followed by rehab, then home, and back to the hospital again. Each cycle she lost more strength and ultimately her will to live.

Mrs. C continued with minor crises, until one afternoon she had a major heart attack. At the hospital the decision was made for hospice, though Mrs. C was no longer responsive.

When did dying begin for Mrs. C.? It was likely months before the word hospice was first mentioned. When the treatments for each medical crisis didn’t bring her back to her prior level of function, and the rate of each medical crisis seemed to come sooner and sooner, this was the white flag her body waved as a sign that the process had begun.

The sad thing is Mrs. C was never told the process had started. She therefore never spent the time reconnecting with her grandchildren, or writing out those stories from her childhood. She just hoped the next medical intervention would turn things around.

Though it didn’t happen for Mrs. C, if we can put away our fears and start talking about patterns associated with dying, we can help others focus on living better.

Explanation of a "Hospice House"

When I was first told that there was a hospice house in Pratt I let out a skeptical humph. Surely this was misinformation. The reason for my skepticism was that only four stand alone inpatient hospice homes exist in the state of Kansas.

Luckily, I was wrong. Although it may seem improbable, there is an inpatient hospice facility in this part of Kansas.

Realizing that the rarity of such places would naturally lead to some confusion on what they are, this gem is today’s topic.

First a little background. When most people talk about hospice they are referring to residential care. This is when hospice comes to where a person in living, whether in a home or a nursing home. The nurses may come as often as once a day, to as little as once a week. This is considered routine care because the actual needs are easily taken care of in that location.

Residential care is the most common because generally people prefer to be in their home, surrounded by family when they die. Unfortunately, though, this isn’t always possible.

This brings us to another type of hospice care called acute care. Acute care is rarely needed, for it is a high level of care specifically for someone with a symptom that is out of control. When the family is ready to hit the panic button, think acute care.

In the past, such a situation may have led to an admission to the hospital or worse, suffering without proper care in the home. This is why we are so fortunate to have an inpatient hospice. In a crisis, someone can come for acute management to the “house”. They get the aggressive symptom control a hospital would offer, with the comfort of being in a home setting. This benefit is covered by hospice, so once again free to the patient.

Acute care is exactly what Mr. M needed. Although able to have hospice at home for months with liver failure, when he began to transition into the dying process things got chaotic. Mr. M began to get restless; hallucinating, trying to get out of bed, and shouting “Help me” continually throughout the night. His wife was exhausted and at her wits end. Mr. M was brought to the hospice house for acute care. Medications were changed and Mr. M settled peacefully into the dying process as family gathered for the next several days at his bedside.

Some may say, “But I knew someone living out there for months!” The hospice house in Pratt has room for 9 patients, but because the need for acute patients is rare, rooms are used occasionally for residential care. Such a person doesn’t have needs at a hospital level of complexity, but still needs the 24/7 support. Because they choose the house to be their home, just like someone’s mortgage or room and board rate in a nursing home, there is a charge for residential care.

The secret is out now; doctors from across the state have sent patients to the hospice house. It’s time we realize what a treasure we’ve got. 

Nuts and Bolts of Hospice Care

“Fear is the lengthened shadow of ignorance.”  -Arnold Glasow

Isn’t it true that we often fear the unknown and things not experienced? Hospice definitely fits that mould. Unsure of what hospice entails, it may seem easier to stick with what is familiar.

The philosophy of hospice, hopefully, is now familiar: to focus on living and quality of life by relieving and preventing suffering. But what of the practical day to day issues? Let’s spend some time unveiling these mysteries.

First we should discuss cost. In 1986 the Medicare Hospice Benefit was permanently established by congress. This fund, separate from traditional Medicare coverage and separate from social security is available to all Medicare patients and covers 100% of hospice services. Specifically this means that there is no charge to the patient for hospice related medications, no charge for medical equipment such as hospital beds, wheelchairs, and supplemental oxygen. There is no charge for nurses, doctors, social workers or anyone else visiting associated with hospice. And by no charge I mean no co-pay, no deductable; essentially this is free medical care.  

Understandably not everyone has Medicare. The good news is that commercial plans and Medicaid usually mimic Medicare in their coverage.

Occasionally someone might not have any insurance, but even that doesn’t preclude care. I still remember taking care of Annie, a 30 something mom with lung cancer, no insurance, and behind on rent payments. She and her 10 year old son were down to just crackers for food at home. The not-for-profit hospice I worked at took both of them in, providing care in our hospice house until she died.

That’s one reason for community fund raisers, it allows us to offer care to the most needy.

Now that we know hospice charges no cost to the patient, let’s discuss other practical points.

Hospice encourages patients to continue to schedule visits with their personal doctor. However, if this is impossible the hospice nurse can help facilitate conversation with the patient’s physician for medication changes and advice.

Unlike home health services which require the person to be home bound, Hospice encourages the patient to get out and about and to continue with activities and travel as physically tolerated.

Often patients fear that if they start hospice they will have to stop taking all of their medication. While sometimes medications are simplified, to decrease something called pill burden, any medication that contributes to quality of life is absolutely continued.

Other patients are afraid hospice will force them to take medications leaving them sleepy or confused. Hospice doesn’t force medication. In fact, my philosophy is that less is better. I only use medications appropriate for a specific symptom I’m treating. If there are no symptoms, there is no need for medication.

It is understandable that things unknown are frightening. Hopefully these facts may ease some of those fears. Hospice isn’t for everyone, but for someone at the end stage of their disease wanting to focus on living well, with free medical care, it may be time to leave the shadows of uncertainty and start the discovery.

Hospice is about Living

It seems inevitable that when people hear the word “hospice” they immediately start to think about dying. I’ve seen it happen, the word is spoken and a certain gloom settles; people began to speak in hushed, somber tones.  The impression is that people who take care of hospice patients sit around in the dark and cry most of the day. 

I hate to break it to you, but quite the opposite is true. Hospice is really about living. That’s right; you read that correctly, hospice is about living life to the fullest.  In fact, the definition of hospice care is to prevent and relieve suffering while improving quality of life. 

As a hospice physician this means I get to spend my time brainstorming with nurses, social workers, chaplains, and volunteers, trying to think of ways to help people live more symptom free, emotionally whole lives.  For Ms. A. with severe lung disease, this meant adding in a medication to allow her to breathe easier. Being able to physically do more allowed her to enjoy living again.  It was something different for Mr. H, who had end stage heart disease and was estranged from his family. Through a series of phone calls and meetings the family reconciled, transforming Mr. H into a new person. At times it’s simple, like for Mrs. B, who after being diagnosed with cancer missed her weekly bridge game. Volunteers stepped in to add this ritual back into her routine, vastly improving Mrs. B’s mood and quality of life.

And here is the greatest paradox of all this; by focusing energy on improving quality of life, people actually live longer. There have been many research studies showing this, the most recent one in the New England Journal of Medicine last August. This benefit hospice has on prolonging life depends on how early someone joins. Simply put, if you wait until the last few days to sign up, there won’t be much added time. The earlier the better is almost always true when it comes to hospice. In fact, what I hear from patients is, “I just wish I would have known about this earlier!”

So, when is the right time for hospice? First you must qualify with a life limiting illness. Typically people think of cancer, but it is much broader than this. Hospice diagnoses include end stage liver, kidney, heart, and lung diseases, stroke, diabetes, and dementia, and that’s just the beginning of the list. Your doctor can tell you if you qualify. Next, you must ask yourself this question: Would I rather have shorter days on earth but feel good those days? Or would I rather have more days alive even if those extra days potentially were filled with suffering? If the answer is quality over quantity, then hospice is the choice.

Finally, that last word choice is crucial. It is your choice. No physician, friend, or family member knows what it’s like be you.

Now if you’ll excuse me, it’s time to get back to work at hospice, back to work living that is.