Hello again. Dr. West contacted me recently and stated that there had been a number of responses and question related the column I wrote on Death and Dying some time ago. He asked if I would respond to these wonderful people who voiced their concerns about this issue. I couldn’t believe that it been that long since I have written a column about anything, and I do apologize! I guess it is true that when people retire, they find that they are busier than ever! With Dr. West’s approval, I hope to remedy that situation, and promise to write at least two columns a month, especially if your questions and comments keep on coming.

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.

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Hello again! I’ve been looking at the discussions posted on GRACE, and noticed that there have been quite a few references to both do not resuscitate (DNR) orders and living wills, so I thought I’d put my two cents in as well. Like Dr. West and Dr. Sanborn, I also have both of these completed, and have had for many years. There must be something connected to working in the health care field that makes us more aware of the need for such documents.

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

Hello again! It definitely has been a very long time since my last entry in GRACE; I’ve missed all of you!

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!

Hello again; its’ definitely been a while since we’ve talked. A few days ago, Dr. West, our hero, asked me to comment on a GRACE reader’s question about a relative who was in complete denial. The state of her unfortunate lung cancer situation was so obvious to all that the friend wondered what the patient could possibly be thinking when she refused to consider her physician’s suggestion that she get her ‘affairs in order’.

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.

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Thank you all for your wonderful comments on the last column. I thought I would try and answer them in another column since there seemed to be so many questions brought up. If I don’t get to all of them, we may need to do another one!

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!

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Finally, I’m back!

After what seems like ages away from work and from any involvement in GRACE, I‘m ready and anxious to communicate with all of you again! I’ve been reading the posts that have been written during my absence, and have been fascinated with the depth of the discussions around the issues of death and dying. At the risk of boring or intimidating some of you who may not be ready to tackle this subject, I do feel that it is such an important subject to explore, discuss, and maybe even get relatively comfortable with, that I would like to provide some input as well.

I am the first to admit that this is a huge topic, one that can be approached from a purely existential perspective in which one never accepts the reality that this is a truth for all persons; to a very personal one in which a person feels absolute terror every waking minute from the point that they have been given a cancer diagnosis, or any “terminal” prognosis. Recently I had the experience of feeling this myself, and I was no where near a terminal state. I was in a skilled nursing facility recuperating from surgery, and I suddenly began to experience severe anxiety attacks, literally panic attacks that centered around the idea that I was dying and would definitely die in that institution away from my family and loved ones. I simply could not get my mind around the idea that I, who have worked with cancer, hospice and death and dying for over 25 years could be so terror stricken! I thought I had worked through all of the angles about it, the fear, the religious concepts, whether there is life after death, is there a soul or spirit that survives our body, the meaning of life and death, everything and anything connected with this subject. And yet, there I was, totally fearful, unable to be consoled, except for some medication finally, and ultimately left to make some sense out of all of it. So, I learned one thing for sure: no matter how much you think you are prepared for something, until it happens to you, you are never prepared! And for most of you, whose death is not imminent, but somewhere out there in the future, we know not when, until our physician tells us that there is really nothing more that can be done medically, except to keep us as comfortable as possible, there is this enormous state of limbo… how do we live, knowing that we all dying?

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Recently one of our readers wrote about her “scanxiety”, the anxiety and fear she feel whenever it is time to have another scan that has the potential to show growth or progression of her disease process. There is not a cancer patient I know of who has not suffered this kind of emotional distress at least once, and usually more often, when such a test is looming. It may be difficult to talk about this fear with loved ones, since most of the time they are either as scared and anxious as the patient is, or maybe in blissful denial, certain that things are going well for the patient. This is certainly a topic that comes up with some regularity in support groups, and there a variety of helpful hints that may emerge from the discussion.

First, recognize that the timing of the scan or test is important. If this is the first scan since the beginning of chemo, some 3-6 months away, the anxiety can be almost overwhelming. However, the first scan often shows some improvement, some shrinkage of the tumor. The first treatments, whether with radiation or chemotherapy or whatever, often has the greatest potential for a response. That‘s why we use the best treatment for the particular type of cancer first, assuming that we have already determined a “gold standard” treatment.

If this is a repeat test and the prior ones have continued to show response to the treatment, a person can feel relatively confident that this scan will show a good result as well. Of course, there is always a point that may come when a scan report may show that the treatment has stopped slowing the growth of the cancer, and there may be a small amount of progression of the disease. The most difficult thing for a person to handle is the uncertainty that comes when ever we test to see how well any treatment is working. Generally speaking, patients can go into a pattern of circular, almost obsessive thinking about what the scan results will be. This sort of thinking process creates even more anxiety as the thoughts keep recurring and we are unable to prevent them from taking over.

This is when I find it helpful to ask a patient two questions. The first one is, “Do you believe you can do anything about whatever the scan results will show?”. The second one is, “What do you believe is the worst possible thing that can happen to you if the scan results are less than positive?”. Almost to a person, patients will answer that they do they not believe they have any control over the test results! Again, nearly every patient will answer that the worst possible thing that can happen to them if the scan results are negative is that they will die! This is patently incorrect! Commonly, the worst thing that will happen is that the treatment will change; the physician will change chemotherapy drugs, or add a different drug or switch to a targeted drug in addition to what has already been tried, but very often, something new will be added to the chemo protocol. If you are a patient whose cancer has not been a good responder in the past, and you have already tried several different chemo protocols, the decision about what to try next may be a bit more problematic, but it still does not mean that there may be nothing left to try. Every year there are new drugs being added to the existing arsenal we have to treat every cancer. And even though a patient may not have responded well in the past, and there are statistics that show that each new drug has a worse chance of being successful than the preceding drugs, we sometimes we get a pleasant surprise. For any particular patient, the new protocol may be just the right one, providing a nice response.

So here we have a situation of such overwhelming anxiety and fear that patients are unable to control all of these negative thoughts and replace them with more helpful thoughts that would allow for better coping when frequent tests and scans are always in the future plans. To return to the first question, I often employ a coping mechanism I learned many years ago. First, I make certain that there really is nothing I can do to help myself in this situation, and allow me to feel more in control. Sometimes that means asking the physician for a small number of anti-anxiety medications, like 10-20 Lorazepam or Xanax. What is interesting is that most of the time I don’t even take them, but just knowing I have them if I need them is very helpful, and if sleep would otherwise be disturbed because of the anxiety, they may really help. Prayer or meditation is also very useful when these recurring thoughts keep coming, but sometimes they are so disruptive that you can’t really concentrate on keeping your mind focused enough to do that. The most helpful thing to me is that if I have looked at all of the activities that might be helpful and discarded them for one reason or another, and I know for sure that I have done the best I can do, but the anxiety is still terrible, there is only one thing left to do, and that is to let go of the fear and anxiety. Telling yourself to let go is to recognize and acknowledge our own helplessness in this circumstance. I know this is not easy to do, especially for people who need to be in control, but unfortunately it is a reality of the cancer experience. I doubt there is a physician around who would really tell any patient that they are in control of this disease; everyone is doing the best they can with the tools that are available to work with.

So, spending endless hours in circular thinking and high anxiety is to rob yourself of the most precious commodity we have; time! We talk a lot in cancer treatment about staying in the moment and living each moment, and the folks who are successful in practicing mindfulness on a daily basis are those who do actually recognize their own limits and work to overcome the irrational fears and anxieties. They ask themselves the questions that will help them to come to the best conclusion for themselves and work hard at truly living in the moment! These sleepless nights and worried daytime hours are robbing you of precious time to spend with family and friends. Keep telling yourself it isn’t worth it and work on all of the positive things in your life. Those scans and test reports will be what they are going to be no matter what you do. So please, work on making the changes you need to do: you will be so glad you did!

Please let me hear your comments.

Leah

by Leah deRoulet, MSW

After covering the highlights of Medicare parts A, B, and C in the last post, we’ll now move to Part D, the plan that provides outpatient prescription drug coverage. If one can afford it, it is usually best to purchase the plan that covers most of the medications you are taking, and this might be available through the Medigap supplemental plan you choose. Then you have one plan that covers both Parts B and D. In cases where this is not affordable, and you do not have prescriptions for many oral drugs, you might be able to get by with an inexpensive Part D supplement plan. I have one patient who pays $25.50 per month for her plan, as well as the co-pays and the deductibles required for the plan. But this is a very reasonable plan. I have other patients who are paying $95.00 or more for their plans, but some of these more expensive plans also covered the dreaded “donut hole“, or coverage gap that occurs after a certain amount of money is spent by Medicare to cover the cost of the drugs. Although there may be some differences in charges relative as to how much money should be spent, for the most part there are 4 areas of Part D that must be traversed. The first one is the initial deductible. The second one is the area where Medicare pays its share of the costs except for the co-pay, which is 25% of the cost of the drugs. The third area is the coverage gap or donut hole, where Medicare pays absolutely nothing until the patient accrues a total amount of out of pocket spending, which can be as low as $3,800.00, including the deductibles and the co-pays and cost of the drugs while the patient is in the donut hole. At the point at which the out of pocket spending meets the necessary monetary criteria (in 2008, that figure is $4,050.00), Medicare then picks up all of the cost of the drugs at a 95% payment rate, and the patient pays a minimal co-pay, usually no greater than $5-10. This is returned to zero again at the beginning of every year, when the plan starts fresh for the next year, and the deductible (and donut hole) kicks in again. Continue reading →

by Leah deRoulet, MSW

Recently I’ve had a few patients who wanted to come in and discuss their confusion about all of the Medicare plans since they had to make decisions whether or not to actually accept Medicare as their health insurance plan or stay on the plan they currently had. Patients who have been granted Social Security Disability and are on it for 24 months receive a letter from the Social Security Administration informing them that will be eligible for Medicare on a certain date, and that they have approximately 30 days from the date of the letter to let the government know if they plan to accept Medicare, and what parts of Medicare they wish to enroll in. So, although the Prescription Drug coverage, Part D is the one that confuses people the most, all of the other plans except Part A are still confusing. Here’s a quick run through of Medicare, and then we will talk primarily about Part D in the next post Continue reading →