How to Improve Your Chances to Live Longer

There really IS something that’s better than the alternative – thinking positively about the future. This article detailing a longitudinal study by Yale researchers, reports that the brains of those whose attitudes towards aging were negative showed shrinkage in the hippocampus, the part of the brain that is important for memory formation. And the same brains also showed a buildup of protein plaques and twists associated with Alzheimer’s.

Is this another chicken vs the egg example? Well, does it really matter? Even if the correlation is that hippocampus shrinkage and protein plaque buildup come before the negative thoughts, humans can control thoughts. So think positively about what aging brings you. Freedom from working from 9 to 5. Lower costs at matinee movies. Senior discounts at many restaurants. Celebrate! Don’t castigate. Applaud the future. Don’t condemn it.

What do you have to lose?

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institute of medicine report urges changes to end-of-life care

The Institute of Medicine has issued two previous reports on issues related to end-of-life care, the first in 1997, Approaching Death: Improving Care at the End of Life, followed in 2003 with When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Their latest report, issued this year and available in Prepublication form, is Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.

 

From the front matter of the report is this explanation.

The controversy on this topic [end-of-life options] and the political desire to avoid it do not alter the fact that every person will face the end of life one day, and many have had hard experience with the final days of a parent, a spouse, a child, a sibling, another relative, or a dear friend. At a time when public leaders hesitate to speak on a subject that is profoundly consequential for the health and well-being of all Americans, it is incumbent on others to examine the facts dispassionately, assess what can be done to make those final days better, and promote a reasoned and respectful public discourse on the subject.[1]

The report refers to the fact that while end-of-life is inevitable, and, for all but the few who die as a result of accidents or trauma, death comes as a result of one or more diseases that require careful management over weeks, months, and even years. Often the diseases bring on diminished cognitive functions, making it difficult or even impossible for family members and those caring for the individual to know the wishes of the person receiving care. When discussions haven’t taken place earlier, at a time when all individuals are able to express clearly what is desired during those final days, the decisions made are based on assumptions, unspoken fears, and even unrealistic hopes for recovery.

When I first went overseas to work for the U.S. Department of State as a Foreign Service Officer, I was advised to talk with my parents and other family members about what I wanted done if something should happen to me while I was overseas. One of my colleagues did and after that conversation she encouraged each of us even more strongly to hold those conversations. She told her parents that if she should die while overseas, she wanted to be cremated and her urn sent back to her family. When her father objected that he wouldn’t be able to accept her death without being able to see her face in a coffin, she changed her mind and agreed with her parents. Even that reason for holding a conversation with my parents wasn’t persuasive, so strong was the fear that talking about death was too close to inviting it.

The IOM report contains five recommendations, in the areas of care delivery, clinician-patient communication and advance care planning, professional education and development, policies and payment systems, and public education and engagement, which the report authors say collectively offer a roadmap for progress in the nation’s approach to end-of-life care and management. The recommendations boil down to: more resources to provide palliative and hospice care, encouragement for doctors and other health professionals to talk with patients about options for end-of-life care, providing incentives to pay care-givers to provide palliative care for patients with advanced serious illnesses outside of a hospital, and requirements for greater training in palliative care for all health professionals.

More than 25% of Americans, including those over 75 years of age, have not given thought to how they would like to spend their last days. Not even 25% of Americans have put their wishes in writing. Yet we all worry about being a burden on those around us, especially financially as we hear again and again that the difference between a comfortable life and bankruptcy is a lost job or a serious illness. Coupled with the fact that by the year 2050 the population of elderly in the United States will have doubled what it was in 2005, according to Pew Research [2], how can we not acknowledge the need for informing the elderly – and their family members – that there are options to costly surgeries and treatments intended to prolong life without considering what the quality of that life will?

My parents got the thinking started when they sent each of us children copies of their wills, powers of attorney, and advanced medical directives so that we would all know what their wishes were and why they had designated my brother as their power of attorney (he was the youngest, but he lived nearest them).

Then my husband furthered my thinking when we sat down with a lawyer many years ago to draw up our wills. He insisted more strenuously than I thought necessary that he did not want extraordinary measures should he suffer a catastrophic illness or accident. It wasn’t so easy for me to agree that his wishes were mine. But by the time we had to go through that process yet again, now that we are live in a different state and we have a grandchild we wish to provide for as well, I had had time to think about it and to conclude what needed to be put into writing to ensure, if accident or trauma do not intervene, I will experience a good death. I will use my time to say I love you to those I love, to thank those around me for all they have done for me, to ask for forgiveness from anyone I know I have wronged, and to forgive anyone who has wronged me. I won’t need more time than that, especially if I don’t even know where I am or who those around me are.

In the words of the IOM report, “A palliative approach can offer patients near the end of life and their families the best chance of maintaining the highest possible quality of life for the longest possible time.”
[1] R9, Introduction to Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, National Academies Press, 2014, prepublication version.

a good death

Day of the Dead - Band by mnd.ctrl, on Flickr
Creative Commons Attribution-Noncommercial-No Derivative Works 2.0 Generic License  by  mnd.ctrl 

I recently re-subscribed to The Sun magazine after several years of doing without it. I like the philosophy of The Sun. It invites its readers to submit short pieces on the assigned topic each month and it does not include any advertising.

Once I re-subscribed, I looked forward to the first issue arriving. When it did, initially I was disappointed. The topic of the that April 2014 issue  was death. After all, like most people, I’d rather not think about death. I spend most of my time and effort working to avoid death by eating healthy, watching all the signs that indicate my health may be slipping, although never getting quite as much exercise as I know I should. And since I am long past the years when I was convinced I was invincible, it is all too clear to me that death is out there and will come for me, probably sooner than I’d like. But as I read each article, I found the message optimistic and uplifting.

Both the interview and the first essay were pieces about and by Katy Butler, a journalist who brought together the lessons she learned after her 79-year-old father’s stroke and subsequent health challenges as well as her research into how modern medicine has changed the way we approach the end of life into her first book, Knocking on Heaven’s Door: The Path to a Better Way of Death.

Her father’s case was not a good death. After the stroke, he developed a hernia, but the surgeon wouldn’t agree to correct it unless a pacemaker was installed to keep his heart pumping. Butler described the amount of information her mother received about the pacemaker as less than she received when she purchased a new Camry. With the pacemaker in place, her father had the hernia surgery but neither of the surgeries did anything to slow his decline into dementia. Her father did not enjoy his final years of life. Because he couldn’t do even the simplest tasks for himself, her mother was exhausted through the process, what Butler calls overtreatment and perverse economic incentives in the medical industry. Butler argues that medical decisions should be made based on the whole patient – and for Butler the whole patient includes the family that will survive the individual.

From my own experience, I have seen how too many doctors no longer seem to consider the even more limited single individual patient as a whole patient. The cardiologists see the patient’s heart. The oncologists see the patient’s cancer. The infectious disease specialists see the pneumonia or MRSA.  The orthopedists see the patient’s bones. The result: one doctor sees progress while another sees doom. The patient and family are left dizzy and confused, in need of advocates to explain what everything means.

Butler didn’t just discuss health and medical treatment in the interview. She discussed the full range of issues involved at end of life. From drawing up an advanced medical directive to ensure those closest know what your wishes are to preparing a living trust to help those who survive take the necessary steps after death. In my own family, we learned how much of a gift it was that our parents had pre-planned their funerals so that when my mother died unexpectedly, neither my father nor the rest of us had to make decisions, something most of us were not in the right frame of mind to do. My mother had already picked out the hymns she wanted sung at her funeral. She had picked out the casket and the liner she wanted. Instead of getting bogged down in these decisions, we could focus on what we needed to do – mourn her passing and celebrate what she gave to each of us.

Before that first issue of The Sun arrived, my husband and I had already met with a lawyer to draw up our living trust, new wills and advanced directives. It was something we knew we needed to do because we had moved from one coast to the other and we now have a grandchild to include. But I still found myself reluctant to think about the details. I knew it was the right thing to do, but I hadn’t yet reached the point that it felt right. After reading Butler’s interview and article, I felt much better.

Butler refers to death as a sacred occasion. “Death used to be a spiritual ordeal; now it’s a technological failing. We’ve taken a domestic and religious event, in which the most important factor was the dying person’s state of mind, and moved it into the hospital and mechanized it, putting patients, families, doctors, and nurses at the mercy of technology. Nonetheless we still want death to be a sacred occasion.”

A peaceful state of mind, the knowledge that I am taking all the steps I can before it is too late to make sure that no one around me has to guess what my wishes are or to have to wonder what I would like done with the things I will inevitably leave behind – that is a good death, the end of a good life.

granny pants

LOGO-AND-PANTS3
I hate to have to admit that I recently bought what I have always considered to be granny pants. You know, slacks from Alfred Dunner, without the inconvenience of a zipper, held up with elastic, the women’s version of sansabelt action pants for men. I guess the marketers think that adding the word action to the description makes them sound like they are for men young enough to be active. And they put them on young men for their catalog photographs, cutting off anything above the upper torso to add to the illusion. But everybody knows they are for men for whom too much action might lead to pants slipping down around their ankles.

Alfred DunnerLook at how Alfred Dunner pants are advertised on-line: except for the very few entries labeled jeans, they all have the phrase pull-on in their name. That description kind of makes them sound like underwear for toddlers, doesn’t it? And I’m sure you all know what type of underwear adults pull on that looks like what toddlers pull up.

I wasn’t looking for granny pants. I just wanted a pair of white slacks for our cruise and I was in such a hurry that I grabbed the first pair I saw. They fit and looked nice with the shirt I was also trying on. I didn’t give it another thought until I got them home and saw the label. Then I felt like crying.

Alfred Dunner is a brand I have always associated with my mother’s or grandmother’s generation. I don’t feel like I am that old yet. I don’t want to be that old yet. But I also have to admit I have been wearing another type of granny pants for even longer, replacements for those cute little bikini panties I used to wear. That style just isn’t comfortable any more. There is just too much of me, some of which, along with gravity, has the power to roll down the tops of those cute bikini bottoms. So I have given in and gone with comfort over vanity for my under layer. I guess going for comfort for the outer layer was inevitable. After all, I am a granny.

paroxysmal supraventricular tachycardia

I first heard of paroxysmal supraventricular tachycardia or PSVT less than two weeks ago while lying on the examination room bed of the medical center of a cruise ship.

My husband and I were on our first cruise, something I had wanted to do for many years even before I reached the age of the retirees who frequent so many cruise ships. It was on the fifth day of our ten-day cruise when I lost track of my two cousins and their husbands after we had taken a brisk walk on the Promenade deck and then headed up to the Lido deck for breakfast. I knew my husband had gone to the medical center to see if he could get something to deal with his cold symptoms, but I hadn’t planned to join him there. But since I couldn’t find my cousins – these ships are huge – I sat down at a small table with my cup of coffee and carton of yogurt, thinking I would eat the yogurt to get something into my empty stomach and then I’d go on a more systematic search for the rest of my group.

I had only taken one spoonful of yogurt and one sip of coffee when I recognized the signs that my body had been hit by a dose of adrenaline — narrowed vision, a familiar and awful taste into my mouth, and feeling that the only thing I really wanted to do right then was lie down on the floor of the dining area. And then my heart started racing. I have experienced these episodes before, but had always been able to stop them by holding my breath. This time, that trick didn’t work.

Another symptom of adrenaline attacks is a lack of clear thinking. As I sat alone at my table, I knew I couldn’t lie down on the floor, and I knew that I wouldn’t be able to begin looking again for my cousins, but it took a long time for my brain to reach a conclusion of what I could do. I felt glued to my chair until I finally decided I just had to get up and back to our cabin where I hoped I could lie down and bring my racing heart under control. I managed to get to an elevator, but I had headed to the wrong end of the ship – in the direction away from our cabin. I was still disoriented when the elevator stopped, so I continued to walk away from our cabin, my eyes focused on the floor, not on the numbers on the cabin doors that would have provided a clue to my misdirection. When I reached the far end of the ship and realized what I had done, all I could think to do was sit down on the floor and try to keep myself from crying. My heart was still racing and now I had to walk all the way to the other end of the ship. I hoped that my husband would be back from his trip to the medical center. 

I dragged myself to the other end of the ship and discovered my husband wasn’t in the cabin. Over and over again I tried holding my breath to see if the rigid shape of the muscles around my heart would stop the racing. I managed to count the number of beats, using the second hand on my watch for 15 seconds to determine my heart was beating at well over 200 beats per minute.

My heart had been racing for at least 30 minutes by the time my husband came into the cabin to see if I was there. He had run into my cousins on the Lido deck and they told him they were worried about where I was. With the help of the family in the neighboring cabin who had a wheelchair for their father, my husband got me to the medical center where the staff hooked me up to an IV for fluids and an EKG to record the evidence of my racing heart. The first EKG involved six leads. When the doctor arrived in the room, she ordered a 12-lead EKG and gave me the most important suggestion of the day: the Valsalva maneuver, a variation of the holding-my-breath maneuver I had discovered on my own. The doctor advised that I hold my breath and bear down at the same time, as if trying to. . . well, I’m sure you get the picture. I did that and didn’t think it had any effect, but just as the nurse got the 12 leads connected and was about to press the button to start the second EKG, my heart stopped racing. The difference was so noticeable to me that I felt everyone in the room should have been able to hear it happen. But they were all still focused on the EKG, so I told them my heart rate was back to normal. And I saw all three of them visibly relax.

Since I have experienced these episodes before, I was a little surprised at how concerned the three medical staff members seemed. Eventually one of the nurses explained that if I hadn’t been able to get my heart to stop racing, they would have had to inject a chemical to force the heart to show down and that procedure often has some unpleasant side effects. She also explained that my heart rate had been 225 beats per minute and that when the heart beats that fast, there isn’t time for blood to get into the heart chambers to be recirculated throughout the body. So while the heart was racing, it wasn’t doing what it is supposed to do and my blood pressure was dropping and my complexion was getting paler and paler on that examination room bed.

I decided I needed to learn more about SVTs – the nurse explained that the P just means the SVTs happen periodically without any obvious cause.

  • First, it was reassuring to learn that most SVTs, while unpleasant, are not life threatening. In my case, there was no pain associated with the episode and it was not therefore a heart attack.
  • Second, there are many maneuvers that may help stop the racing in addition to holding my breath or the Valsalva maneuver. Coughing, sticking the face into cold water, drinking a glass of ice cold water,  standing on one’s head, and pressing down gently on the top of closed eyes are recommendations I might try next time. Well, maybe not the standing on my head option.
  • Third, there are medicines that help prevent the episodes. The doctor gave me one of them, metoprolol, which blocks the action of the involuntary nervous system which reduces the heart rate. Whether I need a daily medication to control an event that has happened about once every two years is something I will discuss with a cardiologist, once I get a referral to see one locally.
  • Fourth, there are other interventions involving insertion of a catheter to deliver radio frequency energy to destroy abnormal electrical pathways within the heart. While these treatments are highly effective, I hope not to have to explore such options, especially since insertion of a permanent pacemaker has been required after such treatments in a small percentage of patients.

The most distressing aspect of my SVT episode on the ship was the advice the doctor gave that I consider leaving the ship either that day or on one of the following two days, our last days in ports, to return directly home. She warned me that our final two days would be entirely at sea, leaving me with no option to leave the ship at that point. I still don’t know if it was the cost of leaving early or the loss of the experiences of the second half of the cruise that was the bigger part of my concern as I spent the next day deliberating those options.

For more information about PSVTs, see http://www.medicinenet.com/paroxysmal_supraventricular_tachycardia_psvt/article.htm 

hospice

The one statement I have heard about hospice again and again is that people wish they had contacted hospice sooner. I wasn’t sure how someone would know that sooner was the right time, so I wondered what that meant, until our family finally had the experience of watching – and experiencing – what hospice can do to make the last days, weeks, even months or more, of someone’s life as pain free, comfortable and fulfilling as possible.

When my baby brother was diagnosed with leukemia in August 2010, we learned that if he didn’t undergo chemotherapy right away, he would likely live only one to two months. When his remission lasted only two weeks, we learned that we would have to wait to see how quickly his strength recovered to know whether he could undergo a second round. Within just a few more weeks we learned that there wasn’t anything more that the doctors could do for him. We talked with his doctor about hospice care as an option, but he slipped away before we could take any action, seven weeks after his diagnosis.

Then in August 2011, when it was clear that my dad would not be able to return to his apartment and we moved him into the long-term care section of a nursing home, one of the emergency room doctors who treated Dad on a recent trip there told us that at some point there would be nothing more that they could do for Dad. When that happened, hospice would be an alternative we should explore.

So we contacted Hospice of the Red River Valley. One of the RNs met with several of us to talk about what hospice could do for Dad – and for the rest of us – and what they couldn’t do. For us, the most attractive service was that hospice would take over as Dad’s primary medical advocate. Instead of my brother and his wife being called to decide if Dad should be sent to the emergency room to have blood drawn or urine samples taken when the nursing home staff were concerned that his blood sugar level was too high or when his behavior made them suspect he had a bladder infection, hospice would send an RN to Dad to take those samples, eliminating both the cost of the ambulance rides between the nursing home and the hospital as well as the confusion those trips caused Dad. But she warned us that it wasn’t automatic that Dad would be accepted for hospice care. She would have to assess him and it would be the medical director of Hospice who would decide if he fell within the guidelines.

After talking with us, she talked with Dad, explaining that she represented an organization that could provide him with additional help while he was in the nursing home, services beyond what the nursing home could provide. Those services included a team of people he could contact for help – an RN, a social worker, a chaplain – in addition to volunteer visitors who would come to visit him, to play cards with him, to read to him. Dad had a couple of questions including just what it would cost. He was surprised when she said that Medicare would cover 100% of the costs. After answering his questions, she asked if Dad would welcome these services. He said he would so she asked him some questions and took some measurements for the assessment.

At that point, the hospice medical director determined that Dad hadn’t yet reached the point that hospice would be the right option. It wasn’t an unhappy conclusion because it meant that those who are in a better position to forecast the future believed that Dad’s health was better than we thought. But more importantly, because of the consultation, we had an excellent understanding of what hospice could do when the time did come.

Then, when Dad had his fifth stroke and his short-term memory became impaired, we knew that the time was right for raising the issue of hospice care again. This time, the medical director agreed that Dad’s condition was within the guidelines. One of the first steps was to stop many of the medications with side effects that negatively impacted Dad’s quality of life. Orders were written that permitted the nursing staff at the nursing home to provide pain management medications to Dad on an as-needed basis. An RN, a social worker, and a chaplain began visiting Dad each week. And occasionally a volunteer, usually a student from one of the local colleges, would visit to play cards or just talk with Dad.

In the final weeks of Dad’s life, calls from hospice staff to my sister-in-law, an RN herself and therefore our translator in all things medical, ensured that we all knew when his health was failing more quickly, allowing us all to make appropriate plans to be with Dad and one another.

Before, I had thought that being under hospice care meant there was no hope. And that meant for family members, considering hospice was something to avoid. And that explains why people often said they wished they had considered hospice sooner. But now I know that I was wrong. Hospice care provides hope. Talking about hospice care, setting up a consultation with hospice providers should not be avoided, even if it seems too soon. We did and that made all the difference in getting Dad under hospice care at the right time.

Take time to learn about hospice now, before you think you will need it.