So last week I received an e-mail from someone regarding something they had heard/read.  For the record, I am extremely bad about replying to e-mails because of the fact that I read them, star them to respond properly later, and then later on I just get backed up so I rarely get to respond back.  I know… I suck that way.  Yet, I definitely wanted to respond to this e-mail… but obviously half-way through my response, I realized it would probably make a better blog post… so here it is.

The Question

Are people who are terminally ill “lucky” to know their death is imminent?

The question itself might seem a little bit in conflict with itself, but consider that I do not think the term “lucky” is used in its normal sense, like in hitting lotto.  I think “lucky” is a relatively poor term to use there, perhaps replacing it with “fortunate” would be better usage.  Hence the reason I will consider the question to actually be:

Are people who are terminally ill “fortunate” to know their death is imminent?

I do not want the original e-mail author to think I have changed the question at hand, but I do think that the word they chose in asking the question lends itself to the probability of misinterpretation.  Now that the question has been clarified, I will provide my views and opinions on the matter.  It is important to keep in mind that these are in fact MY views and opinions, and while you may share them or you may not, it is important to read the entire post and the reasoning behind my opinions before jumping the proverbial gun in the comments section.

From The Outside

From the viewpoint of someone unrelated to a terminally ill patient, there are a number of benefits that one can see:

• •The ability to get business affairs in order and updated
• •The ability to spend time doing things they’ve always wanted to do (aka “Bucket List”)
• •The ability to spend quality time with family and friends
• •The ability to get personal affairs in order and updated
• •The ability to plan and communicate their final wishes

While all of these seem to be gifts of knowledge, there are other viewpoints that have to be taken into consideration.  From the viewpoint of someone related to a terminally ill patient, this is what they see:

• •The knowledge that there is no need to buy the patient a Christmas gift this year
• •The knowledge that the patient will not be carving the turkey at Thanksgiving this year
• •The knowledge that the patient will not be turning 21+ this year
• •The knowledge that the patient will not be at the wedding of his (INSERT RELATIVE HERE) next year
• •The knowledge that the patient will be deteriorating before their very eyes

Right there is a huge difference in viewpoint.  The unattached outsider thinks in terms of “can” and the attached outsider thinks in terms of “will not”.  Still, there is a more important viewpoint to consider.

The 5 Stages of Grief and Dying

Although I have already talked about Kübler-Ross‘s model of The 5 Stages of Grief when it came to myself, this is more of a general post geared towards the viewpoint of the terminally ill, so allow me to reiterate those stages slanted from their perspective:

• 1. Denial and Isolation- At first, the diagnosed tend to deny the reality of the news.  They begin looking for second and third opinions, may turn to alternative medicines, and may withdraw from their usual social contacts. This stage may last a few moments, a few weeks, or longer.
• 2. Anger- The diagnosed may then be furious at the person who gave them the news (usually a doctor), angry at friends and family who appear oblivious to their emotional state, and at the world for moving on without them. They may be angry with themselves as well for having allowed events or habits to have taken place, even if, realistically, nothing could have stopped it.
• 3. Bargaining- Now the diagnosed person may make bargains with God, asking, “Just let me see my children graduate?” or ”I’ll do anything, just make it go longer.”
• 4. Depression- The diagnosed feels numb, although anger and sadness may remain underneath.
• 5. Acceptance- This is when the anger, sadness, and bargaining have tapered off. The diagnosed simply accepts the reality of the situation and can begin preparing for it.  This may happen within minutes, days, weeks, or it may not happen until just moments before their death.  There are some where it will not happen at all.

Now while the Kübler-Ross model has been around since 1969, and there have recently been some studies that have shown some inconsistencies with it, I can tell you from personal experience that they are as accurate as you can get for describing the emotional reactions of individuals on a greater scale.  It is important to keep in mind though that everyone is in fact an individual, and while their reactions can loosely be defined within this broad scope it is in no way shape or form a definitive answer for a patient’s emotional state.

As a healthcare provider it is most important to keep in mind these stages when dealing with terminally ill patients, specifically the anger stage since often times their anger may be directed at us.  Although the anger is misplaced, we cannot take it as a personal affront, but rather remember why the person is truly angry and maintain the compassion that we have for their situation irregardless of their words/actions.  I usually have to remind the rookies that if it were us instead of them, wouldn’t we want the same understanding and compassion?  I tend to think we would.

From The Bed

The viewpoint of the diagnosed is not as simple as it may seem.  Sure, they have been told they have X amount of time left, but there is no firm date given like the one from the Internet Death Clock.  At best, what they are given is an estimate.  Indulge me while I give you two personal examples as to the “accuracy” of life expectancy:

My uncle was diagnosed with intestinal cancer.  He had surgery and went for one round of chemo, after which his doctors told him that he responded extremely well and after two more rounds of chemo he would be considered in remission.  After the second round of chemo my cousin brought him home.  He walked in the door, called out my aunt’s name, and then collapsed in cardiac arrest in the hallway.  The cancer did not kill him… it was an acute myocardial infarction.

While passing from complications or other ailments is not an uncommon occurrence, living past your expectancy by twice the amount of time is:

My Tante Albina was diagnosed with cancer of the liver.  No treatments helped, and she was told in February she had 3 months to live.  In May she was admitted to Calvary Hospital, which is in fact a hospice, since they expected her to pass any day.  She had to fight to avoid being discharged in October, because by then her house had already been sold to pay for her stay and there was no immediate family to take care of her.  Since the hospital had been charged with her assets, there was no money to assist in paying for homecare that they did not want to provide.  Her time in the hospital had her relying on a self-medicated morphine drip, she developed a number of skin ulcers, she had become incontinent, and relied on a tube for feeding.  She finally succumbed to the cancer in December of that year, a full 7 months after the initial diagnosis had placed her demise.

The diagnosed person, while knowing that the time they have on this earth is more imminent than most, still does not know what awaits them.  While there is this knowledge, there is also uncertainty.  It is that uncertainty, coupled with the uncertainty of what will happen after they are actually gone that makes this knowledge more painful than already knowing the following:

• •They will not see their children/grandchildren marry
• •They will be the cause of grief and pain in the lives of their loved ones for which they can provide little or no comfort
• •They will not see what the future holds for anyone
• •They will leave a hole in the lives of their loved ones for which they cannot provide every minute detail, unlike Michael Keaton in My Life
• •They will undoubtedly face pain beyond the threshold that anyone should endure… and at what price will relief come?

While it may be argued that at any time we may walk out the door and never walk back in due to any number of unforseen circumstances, how many of us are haunted by the knowledge that this will happen irregardless of what we do?  How many people have literally had hope robbed from them before their deaths?  The diagnosed patient has had those very things happen.  Perhaps, after reaching the acceptance stage they will be able to see themselves as fortunate for having this knowledge, but I tend to think those in the other stages do not see any fortune in it at all, and especially considering the lack of options offered in the country where they live.

Hospice vs. Euthanasia

Part of the pain of having this knowledge is the loss of control one feels over their own life.  While we have a sense of helplessness when we experience the loss of someone suddenly, we still maintain control over our own lives.  The loss of control over one’s own life and lack of options is undoubtedly the greatest feeling of helplessness coupled with an absence of hope that one can experience and that will inevitably result in a deep depression.

A number of people point to the hospice system as the way for terminally ill diagnosed patients to go.  Hospice care, however, is not only not cheap, but not as simple as it sounds.  Hospice care usually involves assigning the patients benefits over to the hospice, and the hospice becomes sort of your new HMO.  They manage your care, providing pain relief and comfort while cutting out what is considered unnecessary life lengthening care such as diagnostic tests and life supporting machinery.  Hospice does provide a family support network, often will carry out funeral arrangements on the behalf of the diagnosed, and will offer home care so the patient can remain in a comfortable and familiar setting if that is their wish.

Sadly, being in the United States, euthanasia is not an option for the terminally ill.  The fact that control over their life has been taken away by a disease, we as a country do not see the right of the person to retake that control over their life through medical intervention on the patient’s own terms.  We would rather see them push madly on a button to induce a morphine infusion to quell the pain along with their level of consciousness and lucidity that puts them into a state of continuous drool and dismay than give them the option of ending their lives with dignity intact.  We are a country where we will tell someone that they have 3 months to live, but will not give them the actual control over their ending.

In Conclusion

This is a very complex subject which truly has no right answer for the masses.  This is more of an individual based answer, and to which there is no right or wrong when dealing with oneself.  I do think it is wrong to assume that what answer we consider correct for ourselves can be projected onto others so easily.  I tend to think that when approaching it, most people will jump to conclusions based upon their own viewpoints out of either laziness of truly thinking through the subject or a disregard for the viewpoint of others, and that is clearly wrong.

Personally, I do not see these patients as fortunate at all.  I see them as being given life altering knowledge that will in effect change their reality instantly, similar to how reality changes for those who lose a loved one spontaneously.  I tend to think that those people who would see them as fortunate are those that continue to exist in the anger stage of losing someone suddenly, and cannot see past that anger to the viewpoint of those who have received the news a few months in advance.  I can understand why they would see them as fortunate, but I cannot agree with that given the current lack of options available to the terminally ill today.

Hence, in conclusion, no I do not see terminally ill patients as being fortunate and yes, I am pro-euthanasia.