What is the absolute worst thing about being diagnosed with CLL or NHL? I would wager for most patients it is coming face to face with their mortality and having to confront that fear every day. With CLL and NHL - that daily reminder can last many years.
I know most readers have been drawn to the upbeat, positive, research oriented posts I've put out there. I am surprised though that there is very little written about a process we ALL must encounter - particularly one as scary as dying. I don't think this post is for everyone - might be good to come back to it when you are in the right headspace. I want to illustrate the two most common ways I see people pass away and encourage readers to know what their choices are and what they can control. Hopefully staring the topic in the eyes gives you knowledge to make choices that work for you and your family.
In a world where we have "sterilized" dying into a process that frequently happens inside a hospital - many of us have no clue what dying even looks like. Add the existential crisis that death often heralds and it is no wonder that being diagnosed with cancer is one of the most frightening experiences around. Lost among the considerations of watch and wait, when to treat, prognosis, and choosing a treatment there is an underlying fear of the unknown.
I've been present at the deaths of quite a few people. Sadly, the things that patients put themselves through at the end of life can create a lot more suffering for themselves than is necessary. I think most patients are unaware of how their decisions and communication about end of life issues with their medical team can result in dramatically different experiences that ultimately lead to the exact same outcome. With some thoughtful consideration and willingness to talk things through, patients have a lot of power to avoid unnecessary pain.
You cannot go through medical training without being called to innumerbale "code blues" where a patients physiology has entered the "final common pathway" where restoring a beating heart and breathing lungs in the next several moments will determine if that exact moment is the end or not.
Typically a frazzled nurse has been working an increasingly desperate situation for a number of hours. Once the "code blue" has been called the patient gets turned over to a team of residents or ER physicians eager to run their "code algorithms." Whoever is running the code is often completely unfamiliar with the patients history, but has a set of interventions designed to bring the patients physiology back from the brink that apply to just about anyone.
Large IV's are hastily inserted into the neck or groin, chest compressions are administered, ribs pop, somebody holds an airway mask connected to an oversize pill shaped plastic bag squeezing air into the patients lungs until anesthesia shows up and intubates the patient. Often after ten to thirty minutes it is obvious that the efforts are not going to succeed and the "code is called." Housekeeping is left to clean up a situation that has instantaneously turned into a battlefield and the body is removed from the room. The frenetic activity settles down and life on the hospital floor quickly returns to normal although family members may linger for a while processing the sudden departure of a loved one.
In some cases the patient survives the resuscitation only to transfer to the ICU where events slip out of control and the patient dies hours or days later - sometimes after several rounds of CPR are given. If the process goes on for several days, family members are often confronted with the choice of "removing life support." I hope to God I never have to make that decision - it is often incredibly painful for surviving family members.
This is the "default" pathway for anyone who has not made it clear they want something more peaceful.
I can tell you - it is rarely like what you see on TV. In fact, only 0-5% of patients who have advanced cancer who require CPR survive until hospital discharge. Unfortunately the fact that ANYBODY survives often convinces a number of patients that they have to "do everything possible." I can also tell you it is not how I want to check out of planet earth. Fortunately it does not have to be this way.
Determining when to go full speed ahead and when to pull back on interventions requires a lot of judgement. Communicating that balance and guiding a patient appropriately is an art that no doctor has mastered. Every patient is unique and brings their own perspective on their life and death. Some patients approach death with a calm exterior, while others want to cling to every single day available, some even greet the end of a "long fight" with a sense of relief. Working with patients through those issues can be incredibly rewarding but sometime very difficult.
When it comes to determining how hard to push with chemotherapy, I often ask myself two main questions; how "healthy" is the terminal patient. A 42 year old patient with refractory DLBCL is different from a 82 year old with the same relapse. The diabetes, heart disease, strokes, etc that accumulate with age greatly influence how much more therapy a patient can take. I also ask myself how effective the remaining therapies are. If there are very effective, well tolerated drugs that can control the disease, I am much more willing to keep pushing than when the options are few, innefective, or really hard on the patient. Unfortunately the perspective of patients and doctors may differ considerably as to where this line actually is. Sometimes even doctors can suffer from the "cancer of optimism" thinking that the next treatment may just turn things around.
Setting limitations on care most commonly comes up in an oncology practice when you bring up the topic of a patient's "code status." A code status or "advanced directive" defines what sort of interventions a patient wants if they are unable to communicate for themselves.
It can be really hard to know when to discuss this with a patient. You hate to introduce the topic when you meet a patient for the first time because invariably they walk away thinking they have been given a death sentence from their cancer. I also hate to bring it up when somebody's disease has progressed because they may never remember the treatment options we discussed. Anytime there is bad news - bringing up a code status can make a patient think you've told them they are dying. So often I am left to bring it up when things are going well - in fact sometimes the best time to bring it up is after a good CT scan (of course then they question if you were telling them the truth about the scan). Having the patient bring it up on their own would be GREATLY APPRECIATED. As doc's we are human too. It is easy to get really connected to a patient whose life is slipping away. Sometimes I don't want to inflict the emotional chaos I know the discussion will bring.
Keep in mind, a formal "advanced directive" can be totally useless in an emergency if it is filed away in a filing cabinet. In the event of an emergency - your doctor needs to know of your preferences well in advance. Once I have had a conversation with a patient, I copy it into each subsequent visit note so that I can keep it in mind and and my office partners can quickly reference through our electronic medical record. Oregon has a program called POLST which stands for "physician orders for life sustaining therapy." I think it is wonderful because it allows us to give the patient a very easy / portable document that is a medical order in the event the paramedics ever get sent to the house. This document can be used in a bunch of states - I highly recommend it.
It is important to discuss code status early, but when a patient has crossed that gray line where I don't think additional therapies are going to give more benefit than harm - it is essential to be clear on expectations. I often tell patients that when you are 24 years old and you are in a motor vehicle accident, full court press life support makes a lot of sense. Whatever actually happened was a one time event and you just need to get physiology back on track. When you have an advanced incurable cancer though, life support becomes a lot more difficult to support. It is nearly universal that patients with an incurable cancer who experience a sudden turn of events never recover to a level that is actually very meaningful. Yes there are bound to be exceptions and anecdotes but for the vast majority of such patients - such life support is merely time spent with tubes and lines, and hospital lobbys for family members nervously awaiting favorable updates that never really come.
So what is the alternative?
What does it actually look like to die without all the crazy interventions that modern medicine can offer (but probably shouldn't in many cases). I think many people would be relieved to know that in the substantial majority of patients it can actually be a very peaceful experience. There are a lot of different medical pathways that lead to a common set of terminal physiologies. Whether it is bone marrow failure leading to infections, or a pneumonia just taking advantage of a compromised host, or even some cancerous growth that causes a lot of pain requiring ever increasing doses of pain medications - the final few days can often be very peaceful.
Death can happen at home or in the hospital. I think most patients would prefer the former but that is not always possible. Some people are pretty confused about what hospice actually is. I tell patients that accepting hospice is a transition where we focus first and foremost on a patients comfort instead of life preservation. Typically this is at home although it can happen in a skilled nursing facility if necessary. In hospice, trained staff come to you instead to provide necessary care instead of the patient coming to the clinic for a 15 minute visit. Often as docs, we stay involved. We still get medical updates, get asked to sign orders, etc. Fortunately, the patient doesn't have to do nearly as much work as they do when they are still schlepping into clinic once per week. Some of the most wonderful people I've ever met are hospice nurses.
Regardless of the setting, as death gets closer, you generally you observe a balance that shifts from awake and alert to more time spent sleeping and less periods of actually being fully coherent of circumstances. Hopefully this is in the home environment on Hospice, but sometimes it is in the hospital. Frequently narcotics are required for the treatment of either shortness of breath or pain. When you are 29 years old and you break your arm, a shot of dilaudid in the emergency room relieves your pain and probably doesn't put you into a prolonged restful sleep. When you are 69 years old and you've been through a ton of different treatments though that same shot of dilaudid may make you sleep for a few hours. Add to that the decreased kidney and liver function patients accumulate after lots of treatment and you may get to a place where keeping them comfortable requires enough medication that they really are not awake all that much.
Eventually the patient decreases their dietary intake, and their fluid consumption drops off. While you could fight that with IV's and tube feeds that only prolongs the situation until another problem arises. Once the patient isn't taking in any food because they are sleeping most the time they are often quite comfortable. Hunger is rarely an issue and thirst can be helped with swabs. As a doc, often it seems to me that the care provided at that point is really to support the family and keep the patient comfortable. As a doc, I try to set expectations about how long the process may last. I try to get families to agree to turn off the medical monitors so that they are focused on the patient instead of a device that is destined to alarm every hour of the night.
Breathing becomes more shallow as the diaphragm weakens. If the patient has been on IV fluids they often get an uncomfortable "rattle" that reminds me why I always encourage patients to forego that intervention. Eventually the breathing stops. The heart stops shortly thereafter. Sometimes the body gives up one more groan. It often has less to do with pain as it does with the effect of the diaphragm tensing up at the very end. The patient has died. In the substantial majority of patients I've taken care of who have elected not to go through all of the craziness that health care can do - it is often very peaceful. Unbearable pain is pretty uncommon.
I am amazed how "will" can influence things at the very end. Just about every family will tell me at some point, "he is a fighter." Sadly, I don't think that really influences much in the final days. That said, I've seen a number of situations where "will" can profoundly influence the final moments. Sometimes a family says their final "goodbyes" only to have the patient die moments later. Some sort of release allows the patient to let go. I've seen patients who hold out until a particular loved one shows up. Once they are present, the patient lets go and surrenders to the end. I've seen where a family gives a loved one, "permission to let go" and even after seemingly having been asleep for a few days then end comes quickly. Even when a patient seems totally out of it, I tell family members to tell their loved ones the things they want them to know.
As a believing Christian, I've often observed the spiritual journey that is associated with it all - sometimes even hoping that my own faith will give me strength to face my final days. I've seen patients of faith (any faith for that matter) approach the end with quite a few different attitudes. I've seen some really sweet individuals face the end joyfully. I've seen others really struggle with it all. Interestingly a recent study shows that where a patient draws spiritual support (ie. discusses terminal care with doctor versus their faith community) influences how they approach death.
I recognize that it is hard to write a broad post and have it reach everyone who reads it. I know that some people will have personal stories that differ greatly from what I've written - sometimes quite painfully. For those readers who are struggling with painful loss - I am sorry if what I've written causes you any fresh pain.
So what are the take home points on this one?
1) As a patient, you are in control of more than you think. When it comes to terminal care - take the initiative to talk to your doctor about it.
2) Try to find out what is realistic in your situation. Don't let blind optimism put you and your loved ones into a process that really makes everyone suffer.
3) Ask you doctor, "Is my survival measured in days, weeks, weeks to months, or months to years?" Docs are horrible with crystal balls. We tend to speak in averages. No individual is an average. While my projections are likely to be innacurate when death is a long way away, I can get pretty good when it is really close. I can often give an estimate like the one I encourage you to ask above.
Thanks everyone - you all inspire me. I know this is a tough journey but I hope this can help you to think with a clear mind about a very difficult topic.