I’ve read all of the comments from everyone and hope and pray that all of you are still with us. Several of you asked about the possibility of finding peace while living with knowledge that one has a probable terminal illness, and how to actually live knowing that you are dying.

Of course this is difficult and of course you are going to find yourself thinking about how this is going to happen and whether or not you will suffer at the end, and feel anger that this has happened to you, and grieve for your newly perceived “lost longevity”, and for the loss of everything and everyone you love. Every emotion and painful thought you experience is completely normal; all of us will experience some or all of these psychological and emotional stressors on a daily basis. The key is dealing with them to enable you to live to the fullest extent you are able while living with this knowledge and the treatment issues come with the territory.

There are several helpful ways to deal with the thoughts and stressors. First, do not try to suppress them. You will not be able to do so anyway. Acknowledge them, verify that they are realistic and that there is very little or perhaps nothing you can do about the factual situation. Once you have done that, play Scarlett O’Hara; tell yourself that you will think about this again tomorrow, but that for today, it is enough! Second, keep on planning to do things that bring you pleasure; whether it is visiting with friends, having dinner at a nice restaurant when you have enough appetite to enjoy it; spending time with family even if too many people around you make you anxious; limit people to one or two at a time and tell them why you need to do so. Plan to go to a movie, concert or other pleasurable event at a time when you are between treatments so you can enjoy the event with reasonable confidence. Third, don’t put off anything you have really wanted to do in your life. One of you mentioned using money that been saved for retirement to take a cruise you’ve always to take. I can tell you that’s what I would do! I would try to eliminate any possible regrets I have some control of; obviously we all have regrets about actions we may have taken in the past, but we have no control over these; try to control what you can! Don’t feel guilty about it either, remember, you may be making wonderful memories for those you leave behind! Another of you mentioned that all of these thoughts and stressors get in the way of enjoying the very, very precious time you do have left. This is so true, don’t let them rob you of whatever enjoyment life still has to offer! Dr. Goldberg mentioned that the time you have left is the most precious commodity in the world! Use it well!

Lastly, I would like to address the fear of pain and suffering at the end of life that so many of you expressed. Most patient’s physical pain is very well eliminated with so many of the wonderful medications available for this purpose. Many patients are placed on a Morphine drip that can be increased as required; this can be done at home with in-home health care, in Hospice care, or in the hospital. At some point while on a narcotic drip, the patient will become non-responsive, major body systems fail, and the patient will die. There is no pain and the patient is unaware at this point in time. If someone needs to speak to the patient to finish some unfinished business; the amount of the drug can be reduced to induce consciousness, however this will cause discomfort for the patient and should rarely happen. Patients and families should speak to their physicians about where they want to be as their terminal stage begins, what is expected to occur and how these symptoms will be handled by the physician. Pain is generally managed well no matter where the patient decides he or she wants to be when they die; suffering is an existential matter and is usually related to occurrences in life for which the patient feels remorse or regret. I would encourage anyone to try make amends wherever possible, and if this is not possible, to discuss these regrets with your Minister, Priest, or Rabbi. This is almost always immensely helpful and usually generates a more peaceful passing.

There is so much more that can be said on this subject. We have really only scratched the surface! Death and the process of dying is a huge mystery. I have been fortunate to be with many people at the moment of death and that has been an enormous blessing. However, like all of you, I know that when my time comes, I will experience all of the same fears, concerns, regrets, and grief that are part and parcel of the human process.

Bye for now!

Leah

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What are advance directives?
They are legal documents that pertain to a patient’s designated proxy decision-maker and/or the patient’s treatment preferences. Advance directives are not just for people who are imminently dying. They are tools in the process of advance care planning and are for patients who are preparing for the future, in the event that they have a life-limiting illness or life-threatening condition. Every state in the U.S. has some kind of advance directive document in place. You may have heard terms like “living will” or “durable power of attorney for health care” or “DPAHC.” A “living will” refers to the portion of an advance directive that gives treatment directives; as these preferences are applied to when the patient is living, it is referred to as a living will. The “DPAHC” refers solely to the document that designates the proxy decision-maker for health care, separate from the durable power of attorney for finances. The DPAHC and the DPAF can be the same person or two different people. A patient can override their own advance directive at any time—both the treatment preferences and the proxy decision maker.

If you’ve ever looked at an advance directive, the language can be vague and often describes hypothetical circumstances; there have been efforts since the 1990s to improve upon standard advance directives. One widely used alternative is called “Five Wishes.” It is recognized as an advance directive in 42 states. The advantage of this document is that it incorporates more information about a patient’s values. The 5 “wish” categories include the designation of a health care proxy and treatment preferences, but it also has templates for patients to specify how they would like to be cared for, their desires for comfort at the end of life, and what else they would like their loved ones to know.

What’s the difference between an advance directive and a “DNR”?
While an advance directive describes a patient’s treatment preferences, a “do-not-resuscitate” or “DNR” is an actual physician order that carries out what the patient prefers specifically regarding resuscitation. A DNR does not mean a patient is on hospice or is not receiving any active treatment; it is solely in reference to resuscitation. If a patient has such an order in place, it is important that health care providers across different venues are aware; all states have ways to communicate such an order. Oftentimes this is a single-page form that accompanies the patient to wherever they are receiving their care; while in the hospital or in a skilled nursing facility this order sheet will reside with other physician orders, at home patients and families should keep it someplace visible and easy to access—emergency personnel usually recommend it on the refrigerator. In some states, patients can obtain a medical alert bracelet that states that they have a DNR order. As a physician order, the DNR should be honored by all medical personnel.

What’s the POLST?
Some GRACE members may have heard of Physician Orders for Life-Sustaining Treatment, or “POLST.” This is a new set of physician orders that expands the DNR order form to include other related orders. Six states have a formal POLST program and many others are developing one. The POLST form was originally developed in Oregon, as an order set for patients with serious illness and a limited prognosis—it does not take the place of an advance directive, since it does not require the designation of a health care proxy. It does give more specific information on a patient’s treatment preferences, beyond resuscitation to include the use of artificial nutrition, the intensity and focus of care, and in some states, the use of antibiotics. As physician orders, POLST forms accompany the patient across different venues and are printed on brightly-colored paper—for example, California uses “pulsar pink.” The efforts to use POLST forms are in large part a response to advance directives falling short of honoring patients’ preferences for their treatment.

I would be interested in hearing from GRACE members about their experience with any of these documents and whether they find them helpful in planning for the future. All of these documents are designed with the intent of making known and honoring patients’ preferences for their care, but in my opinion, they do not take the place of good communications between patients, loved ones, and clinicians. They serve as tools in the process of advance care planning.

For more information:
General information on Advance Directives: http://www.caringinfo.org/stateaddownload
Five Wishes: http://www.agingwithdignity.org/five-wishes.php
POLST paradigm: www.polst.org

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   The most important aspect of thinking about having these instructions is to make certain that your wishes and desires about such issues as how aggressive you would want your care to be if you were declining to the point that you could not speak for yourself, whether you wish to have a funeral service or not, what you might want said about you and your life in a eulogy, and all of the end of life care decisions that may need to be determined.  I would hope that any of you reading this column today have already completed these documents some time ago.  It is always so much easier to think about these issues when you are not ill and struggling with treatment, but if you have not done so already, perhaps reading this will help crystallize your thoughts.

   In many states, there is a document called POLST, which stands for Physician Orders for Life-Sustaining Treatment. In Washington state, this is a bright green form that is intended for use by physicians to write orders that indicate what types of life-sustaining treatment you want or do not want at the end of life.  The POLST form asks for information about:  your preference for resuscitation; medical conditions; use of antibiotics; and artificially administered fluids and nutrition.  The POLST form is voluntary and is intended to help you and your physician discuss and develop plans to reflect your wishes; to assist physicians, nurses, health care facilities, and emergency personnel in honoring your wishes for life-sustaining treatment; and to direct appropriate treatment by emergency medical services personnel.  A physician must sign the form in order for it to be a physician order that is understood and followed by other health care professionals.  The completed form is a physician order form that remains with you if you are transported between care settings, regardless of whether you are in the hospital, at home, or in a long-term care facility.  The best thing about this form is that it basically requires the patient and his physician to discuss these situations together so that your intentions are clearly understood and honored by your physician.

   Of course, even if you don’t live in a state where POLST forms are used, the links above can give you a great sense of the issues to be addressed.  They may help you generate your own thoughts on these subjects and assist in writing your own DNR and living will documents. The decision to have written directives is a very personal one.  The best way to make your wishes known is to put it in writing.  Some people find it comforting to have written directives; they feel it eases the load of decision making for family and friends.
Some of you may have already completed documents such as the Advance Directives for Health Care, which are authorized in most states, and chosen a representative to act as your Durable Power of Attorney for Health Care.  If you have completed these documents, you should clearly discuss the ramifications of your decisions with the important people in your life: your spouse, your children, your physician, your health care representative, and your siblings.  All too often, I have seen families disagree when their loved ones are dying, because they were not informed about the decisions made by that person when they were in a position to do so.  Adult children who live far away often feel tremendous guilt because they were not there to be with their loved one as the disease progressed, and parents often do not inform their adult children as well as they might, in an attempt to shelter them from the truth (I suppose the protective parent instinct never goes away).  This is why I feel it is so important to make a copy of the forms you sign to direct your health care and send them to your adult children, or at least discuss these directives with them.

   Finally, I would just like to clarify what are considered life-sustaining treatments.  There are several medical interventions that can lengthen a person’s life, delaying the moment of death.  These are:

• cardiopulmonary resuscitation (CPR): this may be inappropriate for certain patients such as those in the process of dying due to terminal illness, or those with an incurable illness, as its use would only lengthen the process of dying.
• respirator/ventilator: a ventilator may not be appropriate for a patient with a terminal illness, because the use of a ventilator may only prolong the process of dying.  In addition, ventilators can be uncomfortable for the patient and often require that the patient be sedated in order for them to tolerate it. The decision to take a patient off a ventilator is extremely difficult for families to make — it is far easier not to put a patient on a ventilator in the first place if the patient has a terminal illness.
• artificial nutrition and hydration: when death is certain or there is no hope of for recovery, the use of artificial food and fluids may only prolong the process of dying. Generally, enough fluid is given to keep the patient as comfortable as possible.

   Life-sustaining treatments do not include procedures or medication given to relieve pain.  A decision to forego life-sustaining treatment will in no way affect the care given to provide comfort and reduce pain.  Supportive care given for comfort and pain relief will always be provided.  And remember, you may change or cancel a Health Care Directive or Durable Power of Attorney for Health Care at any time.  Simply destroy the document, put your change in writing, and tell your doctor, nurse and family about the change.  If you change the directive, give new copies to all of the important people involved.

   As usual, I appreciate your comments, questions and any ideas you might have for another column!

   Bye for now! Leah

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For many years there has been a consistent observation made among cancer patients that married individuals tend to live significantly longer than do unmarried individuals. This observation holds true across different types of cancer including prostate, breast, and lung. For some reason, the warm support of the spouse at your side seems to be a broadly positive prognostic factor, in addition to the other numerous benefits…

There are any number of reasons for exactly why this might be so. Patients who are married tend to have better financial resources and also have better social support, two elements that independently seem to predict for patients doing better. Marriage also frequently results in children (although marriage not required), which can provide additional support at trying times for elderly patients. There are also reasons to think that patients who are NOT married may have problems that contribute to poor outcomes including psychological problems such as depression, substance abuse, and poor health for reasons other than their cancer. Loneliness is a big problem for my unmarried, elderly patients and I can see first hand that their lives are much harder during treatment than those with big families at their sides.

Of course, this is not new data. What is new is a recent study by Dr. Gwen Sprehn and colleagues as Indiana University School of Medicine, recently published in the journal Cancer. Dr. Sprehn used the SEER database to examine the marital status of more than 3 million cancer patients, and this time broke down the 5 and 10-year survival rates by not just married/unmarried but by more specific states. She included married, never married, separated, divorced, and widowed status (at the time of cancer diagnosis) in her analysis.

The best overall survival was seen in the married group, with 5 and 10 year survivals of 63% and 57% respectively. This simply confirmed what we already knew. However, the next highest survival was seen in those who had never been married, at 57% and 52% at 5 and 10 years. The patients who had been divorced or widowed each did worse than never married patients, and the worst of all was those who were married but separated at diagnosis (45% and 37%). Clearly having marrital strife affected their disease outcomes!

There did not appear to be any specific disease-related factor that caused this affect, so why would separation be worse for cancer survival than divorce or being widowed? The authors argue that this could be due to the relationship between high levels of stress and a depressed immune system, which is a well documented effect. Apparently animals that are put under stress have enhanced cancer growth and metastasis in cancer models compared to calm and happy animals. There have also been a number of observations that stress can adversely affect the immune system in cancer patients, as measured by blood markers of immune function and assays of immune cells. Of course, this is only speculation, and other factors such as lack of acute social support and financial problems associated with impending divorce could also be in play.

In any case, it appears that if you get benefit from being married, it is only if you STAY married. The next question is, of course, what can be done about this? Identifying patients having marital issues at diagnosis or during treatment may be an important issue to pick up on. Such patients may benefit from counseling and additional support, which at the very least may improve their quality of life even if it doesn’t improve their survival!

Marriage counseling

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I retired at the end of June from the Swedish Cancer Institute, and have just been lazy since then. I figured I was entitled to a couple of months of doing nothing, after 23 years working there! But now, I am rested, relaxed, and raring to go!

Since coping with a cancer diagnosis and living with the disease is so difficult for many patients, I thought I would just start out with some simple thoughts from a handout I would routinely give to patients to help them deal with their stress and anxiety. I hope it will be helpful to you!

DAILY THOUGHTS FOR YOUR MENTAL COMPUTER
People have recovered from every type of cancer.
Cancer patients can expect to live longer than either heart attack or stroke victims.
A positive attitude helps let go of stress and worry (I know that is not always easy to maintain).
It helps to learn the details of your kind of cancer.
A fighting spirit is healthier than stoic acceptance.
Many patients whom doctors consider difficult are those who are most likely to do well, or live longer than expected.
A fighting spirit can strengthen your immune response.
It’s better to express your feelings than to bottle them up.
Hope and trust help counteract stress.
Stress comes from your own interpretation of events (This is a tough one to get a handle on. Consider how your own self-talk impacts your thinking about your situation).
Hope gives you control.
Refusal to hope is a decision to die (One must hope that the treatment will be of value in extending life, or why bother to take it? At that point, it is self-defeating.)
Consider yourself an equal partner with your doctor in achieving recovery or response.
Listen to your body.
Remember you have power over your body.
Don’t make a career of having cancer.
Don’t save up real living for tomorrow, Live your best today and every day.

I would love to hear from you, and your friends and relatives; especially with any comments or ideas or questions you may have that could benefit you and yours in traversing the cancer journey.

Nice to be back on board!

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   Salivary amylase was used as a proxy for studying activation of the sympathetic nervous system (a.k.a. adrenaline, responsible for the “fight or flight” response).  Normally, this enzyme in saliva declines sharply after awakening and then rises throughout the day.  As expected, this diurnal rhythm was preserved over time in the healthy volunteers.  Caregivers, on the other hand, experienced loss of this normal rhythm over time and then gradual recovery.  C-reactive protein is a measure of systemic inflammation and high levels are a well-documented risk factor for cardiovascular disease.  At the study entry, levels were similar in caregivers and volunteers; however, over time, the caregivers demonstrated increase in CRP.  In fact, half of them developed CRP levels >3 mg/L, a level considered to be a marker for high risk of cardiovascular disease.  CRP levels did not reach a plateau but continued to increase over the year of the study. Over time, caregivers also demonstrated lower expression of anti-inflammatory signaling molecules.

   Interestingly, cortisol output was similar in caregivers and controls, leading the investigators to hypothesize that the sympathetic nervous system rather than cortisol may be directly driving inflammation and suppressing normal anti-inflammatory molecules. On a questionnaire used to evaluate for depression, 67% of the caregivers had scores that indicated depression at the time of study entry.

   What does this study add to our understanding of the experience of being a caregiver for a cancer patient?  The findings are not particularly surprising but, I think, are an important starting point.  The methodology is important: it can be misleading to measure stress responses or hormone levels at a single time point, for example, just after a patient has been diagnosed or during intense chemotherapy and radiation.  This study did follow caregivers over a fairly long period of time and employed multiple measurements at each time point.  The use of a control group also lends credibility to the findings. 

   What can we do with this information? Although it is difficult to do prolonged studies, I think it would be important to continue to follow the caregivers over time.  Since their levels of CRP continued to rise over the year period and had not plateaued at the end of that time period, I think it would be important to try to determine when, if ever, caregivers return to normal.  It would also be important to follow them to figure out if these altered hormonal/inflammatory markers actually led to an increase in cardiovascular disease or other illnesses.  We don’t know whether elevated levels of CRP in someone going through tremendous stress have the same implications as when someone has elevated levels of CRP for no particular reason.  It has been my experience that many caregivers neglect their own health when a family member is going through cancer treatment.  High rates of depressive symptoms were reported in the caregivers but no information is provided about whether any of them got medical treatment/counseling.  A future study might monitor these same biohormonal changes in a group of caregivers given counseling or other treatment for depression.

   Do these findings apply to caregivers of patients with other cancers? This is unknown. Because of the demographics of brain tumor patients, caregivers in this study were much younger (median age 50) than most of the primary caregivers of my lung cancer patients.  I wonder if the effects might be more pronounced in an older population with more medical problems at baseline.  Alternatively, perhaps a brain tumor diagnosis is particularly challenging for caregivers.  It would also be interesting to follow whether there are any correlations between these neurohormonal measures in patients and levels in caregivers.

   I’m glad to see a study like this in oncology, though I think we still have a long way to go towards helping families cope.  Although providing medical care to family members goes beyond the scope of most oncologists’ practice, I think we can at least be more aggressive about enlisting the help of our oncology counselors and social workers.  And put in a plug for family members to continue with regular doctor visits and medical care.

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Denial is one of our psychological defense mechanisms and, believe it or not, it works very well for those who need such a defense. Denial is actually very functional, and I am frankly surprised that more cancer patients don’t employ it. Freud once said, and I am paraphrasing, that no human being could face the fact of their imminent death for very long; truly coming to grips with the fact that one is going to die, and probably sooner rather than later is a terrifying thought. This is when denial really kicks in as the way to avoid looking at this reality. Another very wise man once said: Acceptance is hope co-existing with reality. Denial is hope masquerading as reality.

So, why are some people more able to be accepting of their reality than others? There are many factors that may be involved in this process. Age is a significant one; in general, older patients are more accepting, I think, because of their cumulative life experiences. The older one is, the more losses they experience, and death is the ultimate loss. The patient who is dying knows they are losing more than their life; they are also losing everything and everyone they love. The “survivors” lose only the patient, which is certainly not an insignificant loss, but by comparison , it is not on par with the dying patient’s losses. Older patients have experienced a great many losses by the time they have reached the stage in life that they are considered elderly. Parents, spouses, even children, sometimes adult, may have gone before them, and their ability to cope with these losses normalizes their perspective on life and death.

Younger patients may have a greater sense of injustice, both around the fact that they have cancer and also the fact that it is killing them. This is especially true for those unfortunate people who feel they have done everything “right” in their lives to avoid cancer, and yet still, there it is, forcing them to endure rigorous treatments, possibly lose their jobs or be able to work gainfully, live on greatly reduced income, suffer great psychological pain for their loved ones and themselves, and still, in the end lose the battle. The developmental stage of life a younger person also factors into their emotional state. A person in mid-life who has already passed though many of the stages, including preparation for a career, marriage, parenthood, and yet still has not quite realized all of their goals and aspirations is far more likely to experience this sense of injustice and keep hoping for the miracle that will allow for some longevity.

Additionally, the fact that cancer patients are living longer than ever before, some with chronic cancer that may go into remission for awhile and then recur, creates the expectation that this could go on forever. Often when an irreversible event occurs, such as liver failure, or overwhelming tumor burden in any major organ, such as the lungs, the patient is unable to accept that death is imminent. Most patients that I have known do eventually move into acceptance, but a few never do.

So, is this really denial, or simply the inability to move with speed through all of the stages of grief in enough time to allow them to “get their affairs in order”? The needs that the denial masks may be so important or painful to the patient that the only way for them to tolerate the reality is to deny it. When I think about this process, I wonder why we as a society and a community of patients, caregivers, oncologists, and other assorted health care professionals often feel that people must come to acceptance before dying. Whose needs are being served if patients are confronted with their reality, when it is intolerable to them? Most of the time it is not the patient’s: it is all of the rest of us. So, do we really have a choice? If the patient needs denial, I believe it is OK to allow them stay in it. After all, it is they who are dying, and only they understand why it is necessary for them to stay in denial than to move into acceptance. Someday we will all be in the same position: maybe it won’t be cancer but just getting old, and we may make the same choice!

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Although there is a video version that will stream to people who have subscribed to the feed for the social work vertical, this interview doesn’t have any associated figures other than a title slide, so I’m only providing the podcast link here to the audio version (subscribe to the audio version feed here). Click to listen now.

As always, there’s a transcript to go with this program:

Leah de Roulet Interview Part II Transcript

I always enjoy talking with Leah, and I hope you can get a sense of her amazingly sunny personality through this, even when discussing topics that are tough ones to discuss and still be cheerful with everyone around you.

If there are other topics in the realm of social work and coping with cancer that people would like to discuss, I am always delighted to spend more time talking with Leah, or she may want to write a post about a new topic in her field.

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This interview will be presented in two parts, with the first half included here and covering topics ranging from an introduction to what oncology social workers do, to practical issues of getting cancer care for under-insured or uninsured patients, to coping with a cancer diagnosis.  Here is the audio podcast: Click to Listen

Also available is the transcript: Interview with Leah de Roulet Transcript (pt 1 of 2).  I’ll also note that within the introduction there’s a mention in it about figures that go with the interview.  That’s a stock piece now in all of the GRACEcasts, since the video podcasts all have figures and some of the audio interviews also have relevant figures that can be synchronized to appear during the time in the interview when the information in the figure is being discussed.  This isn’t one of them, though, and in this case there’s just a title figure/slide.

We’ll post the second part soon.  I hope this information is helpful.  I certainly enjoy talking with her and getting her  perspective.

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First, I thought I would address 2 questions that seemed to be about the caregiver. One was about how the death would affect this caregiver, even though she knows that it will happen; including the anticipatory grief caregivers feel when they are totally aware their loved ones death is going to happen sometime in the future. No matter how much anticipatory grief is experienced, it really does not change the grief experience. I believe the reason is true is that as long as the patient is still there and you can speak with them, hold them, touch them, and enjoy just being with them, you cannot experience the utter sense of devastating loss, emptiness, and loss of “life” you will feel when the loved one is gone. If a caregiver has a therapist or a counselor helping them though the patients dying process, that is a good resource to have after the death occurs. Regardless of what emotional or psychological issues the survivor has preceding the patient illness and death; I do not believe their response is
very much different than the average, “normal” person who has experienced a life changing loss. To speak about this aspect any further would bring us into a full blown discussion about the bereavement process, and that is a topic for another column!

Another caregiver mentioned her constant worry about others in her household who may be late, didn’t call when they should, or created scenarios in which she became obsessively concerned that they had been in an accident, or were otherwise injured or in danger. This sounds like a defense mechanism called projection to me. This defense mechanism is often employed, unconsciously, (I might add), to deflect worrying constantly or obsessing about what is truly terrifying: the dying process or death of a loved one from cancer. I think if we look straight on at what is the real fear, that will be helpful in dispelling the projective thoughts. This does not have to a constant process, just taking a few minutes each day to contemplate what you are most afraid of in this dying process or death of your loved one. It is also helpful to write this down, and then you can discuss this fear with a counselor, your doctor, or even me. Then, once you have conquered one fear, congratulate yourself, and move on to the next one. Eventually you will no longer need the defense mechanism, for these fears, though they may re-employed whenever a new threat rears its head.

Ree asked: do people usually come to grips with their eventual dying? I believe most patients do, particularly as it becomes clear to them they and their physicians have done everything they could possible do, to no avail. In addition, if they feel some comfort or relief in knowing that their families will be taken care of, both financially and emotionally after their death, it is easier for them to let go. If their loved ones have been able to bring themselves to tell their patient that will be alright, and to give the patient “permission” to die, no matter how hard the struggle may be to say these words, this is extremely helpful to the patient. There have been a few patients I have seen who really never accept the eventuality of their death. These are usually young parents, mostly mothers, whose children will be damaged by a parent’s death at a young age; and children are inevitable damaged by the death of a parent if the child is under 10 or 12 years old. These parents feel that they have truly been dealt an unfair hand, and often have the amazing ability to hang on long after their health care team has thought they would be gone, and generally do not ever go easily into “that dark night” as the poet Dylan Thomas so beautifully said. Other cases include people who have entered into what they believed was a potentially curable treatment or procedure, and something went wrong. Even though the dangers of such a treatment are well explained to the patient, and the patient has signed an informed consent form, everyone believes that such events could never happen to them, and when they do, and the end result is death, the patient dies feeling that a terrible injustice has been committed and that it is so unfair. These are very difficult situations for everyone to deal with; all of the folks involved, including the family and the health care team, feel awful about this circumstances.

Finally, another question concerned the effects of spirituality and a strong belief system, frequently a religious one on the acceptance of dying. I cannot tell you all how important I think this is in how each of us approaches dying, death, and the whole question of the “afterlife”. People who are strong believers in Christianity or almost any religion, definitely are comforted by their belief in heaven and the thought that they may be reunited with loved ones who have gone before them. Any religious system that professes to an afterlife that is pleasant, not fearful, is immensely comforting to those who believe in it. I have often envied patients who have such a belief system, since unfortunately I do not share it. I am still working it out, this after I have seen many people die, and even watched the “life force” leave the body and looking down and seeing an empty shell. Still too many
mysteries to be certain of anything for me. But for those who do, these beliefs can be a rock to hang on to. However, they can also be rather scary, since for some, if they believe in heaven, they may also believe in hell. I have had several patients, who were terrified because they were sure that according to their religion, they were going to hell! One of these patients was a very young woman who had had an abortion when she was about 17, and of course this act conflicted with a basic teaching of her church. I had called a chaplain to speak with her, but somehow this did not convince her. She had been diagnosed with a stage IV cancer of unknown origin, which the physicians took to be breast cancer, as that was the most likely diagnosis, and she was being treated for that. She had terrible bone metastases, and was in great pain, some of which may have been psychological, but nevertheless, she seemed to be in the category of the approximately 5% of cancer patients whose pain could not be treated with the drugs available at that time. Since then, we have developed several new pain control options, and that figure is somewhat less now.

At any rate, I came into her hospital room one Friday night and spent about an hour with her before leaving for the weekend. She related her fears to me and her certainty that she would be sent to hell for her transgression. As I agonized about what I could say to her that would be comforting, and all of a sudden, I blurted out: “But sweetheart, you are already in hell and have been for a long time! Do you believe in a loving God?” “Yes”, she said. Then I said, “No loving God would subject you to a lifetime of hell after what you have already been through.” She visibly relaxed, and told me she thought that was true, and therefore she would go to heaven. Whatever had occurred in her thinking process gave her great comfort, and when I took my leave, I told her that I was not certain I would see her when I returned on Monday morning, and I also told her how much I had learned from her, and that I would never forget her. And I never have. So I see that some religious beliefs may be a mixed blessing, but in general, I would say that any belief system that provides a person with concrete answers they can trust in, is a great comfort to the patient and the family.

Whew, this was a lot longer than I anticipated. Hope it answered some of your questions, and I also hope it generated more! Anyway, I thought I would close with this trite, maybe clichéd thought, but I still love it.

Yesterday is history,
Tomorrow is a mystery,
Today is a gift,
that’s why they call it the present!

If we are not in touch again before the holidays, may you all enjoy this present, and your presents, and don’t forget to enjoy all days in this hectic but wonderful season!

Love,
Leah

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2. The Delicate Issue of the DNR Order    Hello

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