I wrote this for YOU - I think you'll benefit from reading it

Introduction

I’m writing this because I still hear people talking about a family member suffering terribly at the end of life. In most cases, terrible physical suffering through the process of dying is an indication that quality of care is lacking. My focus is on cancer, but concepts apply to other conditions.

With current standards of care about 90% of patients with cancer pain can have their pain managed (i.e., acceptably pain-free and alert) with conventional means such as oral morphine and adjuvant medications (1). Most of the other 10% can be managed with alternative measures, such as surgery, nerve blocks, and so on. This has been the case since the 1980s (2). In any care situation there may be periods when there are problems – such as in the last few days of life – but these can nearly always be anticipated and successfully treated.

Ways that people do (the kinds of things that begin to happen when pain and other problems are under control): There was a water sprinkler set to hit the window of the patient’s room. Her son-in-law explained that she loved the rain.

Pain and suffering are not necessarily the same. Without going into a lot of detail, physical pain usually results from physical insult and can be enormously influenced by psychological, social, and/or spiritual issues. Suffering can be physical, but may also be psychological, social, and/or spiritual in nature. Most often, suffering is multidimensional. Quality care at the end-of-life addresses all these spheres of being.

I’m not saying it is easy to manage pain, depression, and other problems common at the end of life. I’m saying it can be done and should be done so that deep communication and true healing can occur.

My credentials for writing this are at the end of the post.

Living well within the process of dying

First, understand that you have to be in charge of your illness or your loved one’s illness. Knowledge is power. In addition to Google leading you to legitimate sites such as the American Cancer Society, NIH, Johns Hopkins, etc., you should search Pubmed. Pubmed is the NIH site that lists research articles (enable the abstract feature) on everything imaginable. Pubmed searches are often not quickly rewarding, but persistence is rewarded with breath-taking depth (this stuff really does turn me on). Search tumor type (prostate cancer, etc.), treatment, symptoms, and so on. One caution: not all journals are of equal veracity, so stay with known publications like Cancer, Journal of Pain and Symptom Management, Cochran Review, JAMA, etc. Here is a relevant abstract from Pubmed: http://www.ncbi.nlm.nih.gov/pubmed/23881654

Ways that people do: A few days after he died, a dozen red roses were delivered to her. With them was a note from him, thanking her for their life together.

But can’t you just trust your doctor to do the best thing for you? Hopefully your doctor and the institutions s/he is associated with will do what is best for you, but there can be differing agendas among patients, families, doctors, institutions, payors, etc. Vast sums of money are involved, providers/institutions are always in a CYA (cover your ass) mode, communications vary in accuracy, and so on. If you think about it, without a lot of work, it is highly unlikely that everyone will be on the same page.

Communication

Assertive communications supported by knowledge are essential to receiving the treatment you want in terms of quality of life and managing symptoms. Do you want to be treated with chemo, radiation, and surgery right into critical care to die alone and in pain? The longer aggressive treatment continues, the greater the pain and other symptoms are at the end of life (3). That sorry story has been acted out millions of times. Knowing when to shift the focus from cure to care is a complex and challenging issue.

Is dignity important to you? At what point do you want curative treatment discontinued? How much do you want to know about the diagnosis and prognosis? Do you want to die at home or in hospital? And much more. To do well, you have to know about your disease and treatment – and also insurance benefits, community resources, and more.

Some questions (more specific than is there any hope): What is purpose of the proposed treatment? The usual outcome of (1) chemotherapy at this stage and (2) surgery at this stage. Best outcome? Worst outcome? What will treatment be like in terms of quality of life during and after treatment?

Communication is obviously central to dealing with psycho-social-spiritual issues. Communication with loved ones can be painful – which often is an indication that the communication is important.

Ways that people do: One of my students told me that when she was young her sister had advanced leukemia. They slept in twin beds in the same room. One night, when the lights were out her sister said, “I’m afraid.” My student answered, “Me too” and got into bed with her sister. They slept together that night and all the rest of the nights her sister lived. Despite the fact that everything changed for the better, my student still wondered if she said the right thing.

Why would she wonder if she said the right thing? Because in her (white middle-class) culture, people are supposed to be brave (or pretend like it). They are supposed to be positive. They are supposed to have faith. What a load. How about being brave enough to be honest. How about respecting the person who is dying enough to treat that person as an adult deserving of open, honest and loving communications. How about having about as much faith and positivity as Jesus Christ. “My soul is sorrowful even unto death (don’t leave me).”

When everyone is brave and positive in a false front, the result is often emotional isolation for everyone concerned. What a tragic waste of energy and precious time.

Ways that people do: It was about two weeks before Jan died. Her mother was painting Jan’s toenails. “I guess you’re wondering why we’re doing this at a time like this.” “No, not really.”

When should hospice be involved?

Hospice services should be started early in the process of terminal disease, before symptoms are severe or psychosocial or spiritual problems develop.

It is a fundamental and grievous mistake to wait until things are bad to get into hospice care. Hospice is not an admission that nothing else can be done. Hospice (a good one anyway) is an affirmation of the fullness of life – physical, psychological, social, and spiritual. All these aspects of being are addressed in hospice care. As a result, quality of life is improved in most cases, especially when hospice is involved earlier than later.

Are people who are dying usually distressed to have hospice care introduced? No; they are often relieved.   

Managing pain

Here are some of the keys to successfully managing pain. These are applicable to other symptoms of advanced disease as well.

Oral medications are the first choice except when the pain is first being brought under control - when intravenous or intramuscular medications are used. Controlled release morphine is the first drug of choice for patients with chronic cancer pain. Intermittent patient controlled analgesia (PCA) via pump is fine for pain after surgery, but is inappropriate for severe and chronic cancer pain.

Issues of addiction and tolerance are addressed at the link below. Suffice it to say here, in terminal illness, addiction is not a problem (for several reasons) and tolerance is easily treated.

Medications should be taken on a schedule so that a relatively constant effect is maintained and pain does not recur. It is better to wake the patient for medicine on schedule than to let him or her sleep and then wake in pain. In other words, do not wait until pain is felt (much less, is severe) to take medications.

Primary side effects of morphine and other opioid (narcotic) medications include nausea and constipation. Nausea resulting from morphine or other opioid is what is known as an initiating side effect, i.e., it occurs when therapy is begun and usually ceases or at least decreases after a few days. When a person experiences nausea from morphine or other opioid medication, the antiemetic is then given on schedule so that nausea is prevented. Often the antiemetic can be discontinued in days or weeks.  Constipation is ongoing and treatable.

Other principles are discussed at the link below.

You can see the basic idea is (once under control) to prevent pain, nausea, etc. Basically in a pain situation it is nothing other than gratuitous cruelty to demand that a person suffer before receiving relief.

Ways that people do: The hospital bed was in the living room so that he could look out into the neighborhood where they had lived all these years. He could see a rose bush he’d planted long ago.

Did you ever have a painful procedure or treatment done and were given pain medication after the treatment? That’s not quality care; it’s poor care that demonstrates a lack of concern about you. It is not rocket science. MEDICINE SHOULD BE GIVEN/TAKEN BEFORE THE PAIN EVENT AND/OR BEFORE PAIN RECURS.

“The link below” No longer operational

This links to a website I created – Terminal Illness: A Practical Guide for Patients, Families, and Providers (hosted by Baylor University). There are straightforward discussions of what to do about pain, difficulty breathing, depression, anger, etc., etc.; how to tell when someone is dying; organizing family and friends; and many other problems and issues of dying. There is also a good low-cost coffin resource on the site. 

I invite you to use this website, as well as Pubmed and other suggested resources to do the work that will ease your loved one’s passing as well as your own passing. Link does not work 

https://bearspace.baylor.edu/Charles_Kemp/www/terminal_illness/Terminal_Illness.htm

Ways that people do: “Finally, we’re being honest with one another.”

References

(1) Oral morphine for cancer pain. http://www.ncbi.nlm.nih.gov/pubmed/23881654

(2)  Coyle, N., Adelhardt, J., Foley, K.M., & Portenoy, R.K. (1990). Character of terminal illness in the advanced cancer patient: pain and other symptoms during the last four weeks of life. Journal of Pain and Symptom Management. 5,2.

(3) Predictors of Symptoms and Site of Death in Pediatric Palliative Patients with Cancer at End of Life.

http://www.ncbi.nlm.nih.gov/pubmed/23901145

Credentials

My credentials for writing this: I have provided care (as an RN, later as a nurse practitioner, and also as a volunteer) for many people at the end of life. I founded the first hospice in Texas, which, when I left was serving more patients than any other hospice in the US. I have taught palliative and hospice care in undergraduate and graduate schools and have written a book and about 30 articles and chapters in professional journals/books on end-of-life care.