Being Prepared.

I’m looking forward to my parents coming to Darwin next week. That is if my Dad is up to it; he fainted at the pub last week and has been in hospital until today. In any case, I suspect that Mum will come anyway, regardless of Dad’s health, she want’s to celebrate her 80th with her four sons.

It’s easier for us all to get together in Darwin now that the youngest (Paull) has taken a teaching position in the East Kimberly region of W.A. Geoff (the third son) is coming to Darwin for an AHA conference, perhaps he’s about to collect another award, to add to Manager of the Year he got in 2003, for managing the Alyalgula Recreation Club on Groote Eylandt.

Dad’s health is symptomatic of a new phenomenon in modern health care, as put by Jill Margo in the WE AFR (19-20 Feb; available online for $3.30), “Now, people can be diagnosed with a fatal disease but can also have treatment that will keep them alive for years. This delayed dying means having to learn to live with a terminal illness. It means having a fairly good idea of what you are going to die of, but not knowing how much time you have left.”

She goes on to say that “the length of time you have depends on having access to good treatment.” In my father’s case the treatment is the best. And very cheap! Because he served in the Navy during WWII he’s eligible for the Repat gold card. If an aboriginal living in the NT had the same cardiovascular problems as my father he would have died decades ago, well before the triple bypass.

The article goes on to detail the difference between treatment regimes today and three decades ago. More than just treatment protocols have changed. Informed consent is the medicinal buzzword of the naughties. My wife’s friend had to sign (and initial each page) a six-page consent before the surgeon would perform an elective hip replacement.

I’ve long been keen on patients, and their families, learning as much as they can about their illness so that they can discuss options with their medical practitioners. So much more information is available today compared with a decade ago, so that patients, particularly those with terminal cancer, can make choices about their treatment. It is quite reasonable today for men with a prostate cancer diagnosis to choose the ‘do-nothing’ option. Or, those with lung cancer (fatal in 95% of cases) choosing not to have chemotherapy.

So it was a pleasant surprise to come across an online book Choices In Healing: Integrating The Best of Conventional and Complementary Approaches to Cancer by Michael Lerner that has done the hard yards and assembled a plethora of references that cover everything from French Aesthetics and the Preservation of Sexual Organs to Spiritual Approaches to Cancer.

FOREWORD
A diagnosis of cancer can be so overwhelming, and our health care system so bewildering and impersonal, that one often doesn’t know where to turn or whom to trust. Many people, sensibly, want to know all their options, only to discover that cancer and its treatment, conventional and otherwise, is a universe in itself, and a rather intimidating one at that, especially for the cancer patient who has at most a layperson’s knowledge of science and medicine.

Cancer and cancer treatment has a history, a politics, a mainstream, a lunatic fringe. There are a multitude of choices and treatment decisions to be made even within the mainstream culture of medicine. Then there are other potentially valuable treatment avenues outside of the mainstream. Some people will want to at least become informed about them and consider them in their decision-making process. Some are specific to cancer, others are adjunctive or palliative. Some support generalized health and healing. Each has potential risks and benefits which need to be weighed according to the specifics of the disease, one’s life situation and personal values, the time frame involved, and of course, the latest research findings, which are usually incomplete and more suggestive than definitive.

While medical and surgical oncology specialists know their own fields well and are in an excellent position to explain certain risks and benefits to their patients, they are frequently ignorant and sometimes scornful of other views or approaches, even if they are intended to be complementary or adjunctive to more mainstream approaches. So it is not unusual for the person with cancer and his or her family to wind up feeling isolated and on their own in trying to decide what to do.

I am especially impressed by the words Lerner has written on death and dying. Until now the best reference I have had is Kubler Ross’ seminal work “On Death and Dying”. Lerner starts his chapter with 12 ‘critical things’ with which I find great empathy.

1. There is skill, choice, knowledge, and control in death and dying just as much as there is in the fight for life with cancer.

2. Some people believe that death is the end; others that life after death is a certainty. My own belief, as Rachel Naomi Remen puts it, is that death is a mystery worth contemplating. Death for me is a mystery in the deep sense of the term: a real possibility exists that life in some form continues after death, and intriguing scientific literature supports the spiritual writings and the experience of many people who have had remarkable near-death experiences. Forceful arguments exist on the other side.

3. Whatever our beliefs about death, it is a fact that there is such a thing as dying well, and that we can consciously work toward dying well the way pregnant mothers work toward birthing well – and with the same uncertainty and absence of judgment about how we will actually fare in the event.

4. There is no single way of dying well, but an infinite variety of ways. A good death might be described mentally and emotionally as one in which – in the face of whatever biological experience we shall have – as much movement toward wisdom and healing as possible takes place for the one who is dying and for those who love him. A good death might be described physically as one in which pain and discomfort do not exceed what can be decently endured.

5. It is very useful to recognize the distinction between our fear of dying and our fear of death. This distinction then helps us focus first on specific fears we have about the dying process.

6. Most people are more afraid of being caught in interminable suffering during the dying process than they are of death itself. The reality, as we have seen in the chapter on pain, is that, in most cases, severe pain can be controlled and made tolerable.

7. Another fear people have is that they will remain alive when life no longer feels worth living, when they have become a burden to people they love, or when their dignity has been taken from them. This is a more complex set of concerns to respond to, but one important fact, emphasized by the great physician Eric Cassell, is that many people with cancer die within a relatively short time of having truly decided that they are ready to die.

8. If death does not come to us at the point where we have truly decided that we no longer want to live, then we do have the option of taking our own life, if our religious beliefs allow it and if the suffering becomes intolerable. In the Netherlands, physician- assisted suicide for those facing a life no longer worth living is an acknowledged part of a public policy that requires the physician to follow a carefully prescribed protocol. In the United States, a great debate is currently taking place over whether physician- assisted suicide should be legal. Many American physicians do assist patients in dying if all that remains is a painful existence without dignity. Whether or not physicians are willing to assist us, many patients with life-threatening illnesses (AIDS patients have led the way in this) have simply learned what drug combinations are effective in suicide and have set those drugs aside for the day when life is no longer worth living.

9. It is critically important to make sure that you have the best possible medical and nursing care while dying. Those physicians who are wonderful when you are fighting for life may not be helpful when you are dying. The same is true of hospitals – a place that is superb for high-technology cancer therapies may not be the best place to die. One of the most difficult aspects of dying is the discomfort that may arise from many different sources. Helping a person relieve these symptoms and discomforts is a very high medical art that demands the interest, care, and attention of physicians, nurses, and caregivers. Finding the people in your community (they are often connected with a hospice) who are dedicated to this great human task can make a world of difference in the experience of dying. If you choose to die at home, the choice of home health care aides skilled in helping people die is at least as important as the physician and nurses you work with.

10. Some people are afraid that making practical estate arrangements or other arrangements for dying means that they have given up the fight for life. My general experience is that preparing for the possibility of death does not interfere with the fight for life at all – in fact it can enhance it, because you have taken away the worry of not having dealt with these very practical matters. Taking care of the things you want to take care of actually releases energy for the fight for life.

11. Part of preparing for death is giving some thought to helping loved ones with the grieving process. This can be tremendously important, because incomplete grieving often injures the rest of the life of a mate, a parent, or a child. In the process of a good death, a great deal of the mutual grieving of patient and loved ones takes place while the patient is still alive and participating. If this process takes place as consciously and fully as possible, the death can sometimes become, strangely, a great healing for all involved. While there is still grieving to do – a great deal of grieving, perhaps – it starts from a solid base. There are some excellent books on grieving as well as good grieving support groups and therapists. I strongly recommend learning about these resources for survivors.

12. Our culture’s attitude – in which death is a highly toxic subject and seen as a failure, either of the doctor or of the patient – is not only new historically but at odds with that of other cultures. In many cultures, dying is surrounded by rituals in which everyone participates. For many centuries in the West, this was also so. Death was often seen as the culmination of a life, and people gave great thought to how they might die well. It is possible in our culture to detoxify death by contemplating it, seeing what others have thought and said about it, and by giving ourselves time to be with it. In the face of sincere contemplation and prayer, the toxicity with which our culture has surrounded death often begins to dissolve.

I like to think that by,“contemplating it, seeing what others have thought and said about it, and by giving ourselves time to be with it,” I’ll be better prepared when the inevitable happens.