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.