This post is in honor of National Hospice and Palliative Care Month, which ends today.
I wasn't always passionate about palliative care, hospice, and end-of-life issues. In fact, I distinctly remember a time when I was very much on the "do whatever necessary to keep someone alive" bandwagon. When I was in high school or college, my maternal grandmother told me about her "living will" and desire to not be resuscitated if she stopped breathing. I was horrified. She was in her late 70s and in fairly good shape for a woman her age, but she did have a heart condition. In my youthful arrogance, I imagined myself ignoring her wishes, doing CPR anyway, and having her thank me when she woke up because...why, I don't know.
My views on that subject began to be more flexible when I went to seminary, which tends to be a time of examination and reformation of values, anyway. As I formally studied ethics for the first time, I began to become a little more open-minded. During my final semester of seminary, the
Terri Schiavo case was front and center in the news, and there was a lot of discussion in our community around that issue.
However, it wasn't until the summer after I graduated from seminary that my current passion for end-of-life care was kindled. As part of my requirements for ordination, I did a unit of Clinical Pastoral Education at a local hospice. (In case you're not familiar with Clinical Pastoral Education, or CPE, it's basically supervised chaplaincy work, reflection in groups and one-on-one with a supervisor, and teaching seminars.) Over the next ten weeks, I learned so much about intentional living and dying, quality of life vs quantity of life, and the courage it takes to stop curative treatment, accept the end of your life is near, and do whatever possible to die on your terms. I was able to walk with several patients and families on that journey. One of my favorite memories was spending time with Charlotte, a patient with terminal cancer, the day before she died. We had gotten to know each other fairly well, and it was both painful and rewarding to pray with her and tell her goodbye, knowing that the next time I saw her would be in heaven. She died on her terms; surrounded by family in the inpatient hospice unit.
The phrase "dying with dignity" is often tossed around by those of us in "the business", but it's really a misnomer. Dying, in and of itself, is completely undignifying. After all, by the end you lose control of most things and are totally dependent on other people. I think a better phrase is "dying with as much dignity as possible", but I guess that doesn't sound as pretty.
The fact is, one of two things are going to occur: either Jesus will come to us (i.e. the Second Coming) or we will go to Him (i.e. death. I'm not preaching universal salvation; I'm simply saying that I believe we will all have our five minutes with Jesus before going to our final destination). Unless Jesus returns in our lifetimes, WE ARE GOING TO DIE. Moreover, we don't know how or when that will occur. I may be only 34 years old, in good health, and live a low-risk life, but I could die tomorrow or I could live another 60 years. Or, something could happen and I could receive devastating physical and/or mental injuries. I don't know the future, and neither do you. Only God knows the future.
Therefore, it makes complete sense to me to make some preparation and do some reflection on the future, and I encourage everyone else to do the same. First, everyone over 18 should have an
Advance Directive (click on the link for more information and a way to download one that meets your state's guidelines). If Terri Schiavo had had one, then the whole fiasco over the feeding tube probably wouldn't have happened. Second, you should discuss with your family (parents, siblings, spouse, or children depending on your place in life) what your wishes are in regards to artificial life support, organ donation, and the like. That way, if you can't communicate your wishes, your family and Advance Directive can do it for you. Third, think about what gives your life the most meaning, and what you might be willing to give up in order to prolong your life. For example, my mother had to "back away" from some things she's been doing for years and LOVES, because of the time commitment and side effects of her chemotherapy. However, for right now, she feels that it's worth it to give those things up in order to have a fighting chance to have more years with her family (not that it's my decision to make, but I agree). Finally, if you're over 60 or have a major health condition, I would also have a funeral home picked out and (if you're not a part of a local faith community), have an idea of who you would like to do your funeral. There have been so. many. times. when I have worked with a family whose loved one is dying/unable to communicate/just died and they are lost as to what to do, what the person would have wanted, what funeral home to call, etc. Advance planning, as difficult emotionally and logistically as it is, can make things so much easier when the moment comes.
And if you can afford it, get life insurance for yourself each member of your family. It's not uncommon for funeral expenses to run past $10K, so I would recommend at least that much, if not also enough to pay for outstanding medical bills, joint debts (if you're married), and any other transitional expenses.
My grandmother died in July of 2009 as a result of her heart condition and injuries resulting from a fall a few months prior. She simply went into cardiac arrest, and since she was a DNR (Do Not Resuscitate), that was that. I was not with her when she died, but if I had been, I simply would have held her hand, told her I loved her, and let her go*. Because it was what she wanted, and it was the best way for her to die with SOME dignity.
*Not that it would have been my decision. She had actually made my cousin Mike her power of attorney, so he would have made the decision. But you get my drift.
I'm jumping off my soapbox now. I could write another several paragraphs, but your eyes are probably already glazing over. (: However, if you ever have any questions or comments, leave them in the comments section below or e-mail me, and I'll be happy to either answer them or point you in the right direction. I'm not an expert by any means, but fairly well-informed and very passionate on this subject.
