Monthly Archives: October 2013

Helping Others Sustain Peace Improve Comfort Experience = H.O.S.P.I.C.E

Hos-pice (hos’pis) , n. 1. A house of shelter or rest for pilgrims, strangers, etc. esp. one kept by a religious order. 2. A healthcare facility, or a system of professional home visits and supervision, for supportive care of the terminally ill. (Webster’s Universal College Dictionary 1997.)

Over the past few months I have been contacted with questions from people who have loved ones in an advanced declining state of health. The content of the discussions was mostly as a listening role for me and an offer of hope. The experiences over my lifetime in addition to 21 years in healthcare with more than ten years in Hospice have given me a breadth of understanding of the wave of fear, doubt, and panic that occur when we are faced with death. No matter the religion, culture, or level of education, these feelings have one common denominator in my mind: Hope.

As my clinical path wound through the multitude of different environments, I became more and more confident that Hope is never lost on any outcome. It simply changes focus. Hope shifted from total recovery, and cure, to hope for a remission or treatment’s extension of time to reach a goal, such as the birth of a child, graduation, birthday celebration, travel or any number of “bucket list” opportunities held in high favor. Or hope for palliation from symptoms during chemotherapy, radiation, post-operative healing, or pain.

Along this journey there are different options for care. Palliative medicine is one of my most cherished choices. Anyone suffering from acute or chronic pain has the option for palliative care. Pain therapy is very similar and works in cooperation with palliative medicine in dealing with precision spinal infusions, joint injections, nerve block therapy and multiple other avenues to seek relief. In the cases of more severe diagnoses as cancer, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig’s Disease), Alzheimer’s, stroke, heart disease and many others, often the “hope” shifts from cure (or maintaining function) to care. This is when Hospice becomes optimum as a continuation of support to maintain the desired relief from symptoms. This support can take place in a patient’s home, a specialized Hospice Unit in a hospital, or nursing home. Palliative medicine can occur simultaneously with hospice care.

Hospice care is provided by a variety of agencies and private groups. Some hospitals have hospice in-patient units; others are private hospice agencies not affiliated with a hospital but may still have their own hospital-based hospice unit. Still other Hospices have a “hospice house” which is more of a home-like setting staffed by the same supportive system available in the homes or nursing facilities. Hospice staffs consist of a medical director who is usually a doctor, nurses (RN, LPN), social workers, volunteers, personal care aides and chaplain. Private duty personnel are often used through funding assistance from Area Agency on Aging or are privately paid people who have had caregiving experience. Together with a family centered approach, the Hospice experience guides the journey and directs the care.

In the private home setting, the responsibility of the family is often misunderstood as “Hospice will take care of everything”. There are usually only limited 24/7 Crisis Care options that are available and this is an important topic to be discussed during the initial interview with Hospice staff. Safety and comfort become the hope and priority. Occasionally, after hospice involvement, symptoms are relieved and patients may actually live longer with more quality time than originally expected. Hospice regulations maintain that as long as there are continued changes or declined function, re-certification is permissible and on-going evaluations occur within strict guidelines by the Hospice staff. There are even those who stabilize or improve while on Hospice who could return to continued palliative care and visits with their regular doctor. If their health declines, they can be readmitted to Hospice status. Not everyone dies immediately who elects hospice care. Often it is the delay in the referral or election of Hospice that dictate the statistically short length of Hospice involvement. It is this fact, along with the intention of Quality of Life, that will allow my continued involvement in discussions with anyone interested in Caring Choices conversations.

Just the Facts Ma’am

This past week I took one of those social media quizzes to determine whether I’m left-brained or right-brained. The results indicated that I’m 2/3 left and 1/3 right – no surprise to me or those who know me well. While I appreciate art and music and all things “creative”, I am a creature of reason and preparation. I like facts. I like statistics. I analyze things from several angles to be sure that I’m considering all the options. Of course, my admiration of facts, statistics and details has certainly not prevented me from making bad decisions on occasion. In addition to my love of facts, I am also an emotional being. Through hindsight, I have realized that my bad decisions were almost always made during times of emotional extremes – when I was feeling euphoric over a new relationship or experiencing the death of someone I loved. I have learned that making decisions based solely on my emotional state rarely produced a good outcome.

One of today’s NYTimes’ opinion pieces discussed some reasons that people make bad decisions. Two points in this piece resonated with the literature review I had done in my graduate work on palliative care. The author suggests that (1) people do not like to, and therefore will not, challenge those whom they believe to be authorities (e.g., doctors, financial advisors, lawyers) and (2) intense emotions, especially anxiety, stress and fear, interfere with our decision-making capacity.

The author also noted that our own optimism is a culprit in bad decision making. In a nutshell, we tend to ignore “bad news” we might receive and instead focus only on the “good news.” We look for that one in a million case that ‘proves’ we have a shot too. Someone has to win the Powerball eventually, right? (The odds of winning the Powerball are 1 in 175 million yet how many of us still buy that single ticket?) Likewise, someone could be the medical miracle – why not me or my loved one?

An elderly man once told me that he never expected to become totally dependent on his family. He required help with feeding and bathing and dressing and walking. He needed help with everything that he had been doing for himself just a few weeks before. He had lived with heart disease for nearly 30 years before receiving a cancer diagnosis. His treatments impacted his ability to function without his family’s assistance and he most recently suffered a stroke which took not only his remaining (albeit limited) ability to function, but it stole his independence. Even with all of these medical conditions and the complications they bring, he never considered the fact that he might become totally dependent. He remained optimistic that he would manage his conditions and die peacefully in his sleep one night.

The facts are that nearly 50% of American adults live with a progressive chronic illness. One- quarter of elderly adults (over 60) is living with two or more chronic illnesses (called co-morbidity in the healthcare arena). As science and technology allow us to live longer, these chronic conditions will require us to examine more facts and consider all options. Most Americans (nearly 90%), when asked, say they want to die in their homes and be cared for by loved ones. Many Americans, like the man above, expect to die peacefully in their sleep. The reality is very different. During my graduate literature reviews on end-of-life care, I came across these facts:

Most of us will die after experiencing a chronic, progressive and ultimately fatal illness.
Approximately 80% of deaths will occur under the care of health professionals in some type of healthcare setting (hospital, nursing home, hospice unit).
When the time comes to make important end-of-life decisions, approximately 50% of people are incapable of participating in those decisions.
When health professionals are uncertain about what decisions to make, the default is to treat [whether you want treatment or not].
If health professionals and loved ones have not spoken with a patient about end-of-life issues, they cannot reliably predict what the patient would have chosen and they find the decision making responsibility burdensome and stressful.

Talking about our fears, examining facts and risks, and sharing hope are equally important pieces of the healthcare conversations that we all need to have. We may also need to adjust our expectations. These conversations will be difficult. They will be emotional. The process may, at times, be intensely sad. But, it can also be liberating for those who want to talk about their illness and share their decisions with loved ones. It can provide opportunities for families and friends to share what’s most important to them. Examining all the facts (good and bad), through tempered optimism, can alleviate bad decision-making and decrease the feelings of guilt and burden that so often occur when decisions are made for you, by others, in states of anxiety, stress and fear.

Caring Choices can help you work through the anxiety, stress and fear to examine all the facts and make decisions that will be good for you and for those who love you.

Question With Love

Initially this title graced the cover of an essay I had written for my Professional Ethics class way back in 1990. As part of the introduction to the presentation I started out with a blank chalk board and then drew a giant Question mark. Only beneath it I substituted a heart for the period. The theme in my mind was simply “Question with Love”. I then asked my classmates “What does this mean to you?” The result was such an interesting dialog and debate that I have used this over and over whenever the opportunity would present itself. And each time, there were positive outcomes in the discussion flow and almost everyone became highly engaged in sharing their thoughts.

What I witnessed during the varied conversations and multiple group dynamics was a genuine interest to understand my little image and associate it with the subject matter at hand. Wherever I drew this, on notepads in support group meetings, on white flip boards at inpatient Psych Therapy groups, in stone along the Oak Creek shore line near Cathedral Rock in Sedona, on chalkboards in classrooms, or on napkins during Hospice visits, I could see desire in the eyes of most everyone present as they explored their thoughts with a softer tone and somewhat of a more accepting broader approach.

One of my dearest friends in life suggested I read a book by Albert Ellis. After reading the line “Lets face it: Reality often stinks.” (p.197 of Albert Ellis/Robert Allen Harper’s book A Guide to Rational Living), I laughed out loud at the truth of this statement. We struggle our whole lives against both inward and outward resistance with different challenges, tasks, ideals and goals. And often we require help in many forms along this journey. The efforts of a few to embrace the needs of many seem to be an ongoing theme in the hearts of mankind. The September 2013 front page of Time caught my attention recently, with its “Solve Death” in brilliant color. Extending life is a stellar idea. Preparing for the future is as important with regards to Palliation of the symptoms of the aging process. As science lengthens lives so also does the number of people who will require more complex management of their extended lifespans. Longevity is a wonderful concept. As long as we ramp up our efforts to add Quality to Quantity. So now, with the acceptance of “Reality often stinks”, we are confronted with the current changing health care responsibilities in our lives.

Caring Choices will help you “Question with Love” when dealing with the often never “Black and White” decisions regarding the future healthcare quality we would want not only for ourselves, but also our friends, family, and those who are entrusted into our care. We all have such a wide variety of differences between us in the way we live. The two common denominators for each of us are, we all have no choice in how we came into this world and, if we leave it. What most all of us do have, is the choice how to live it.

Stop Worrying

Before sitting down to write this blog, I had several themes running through my head. Topics ranged from national concern (under-utilization of hospice and palliative care) to the imperative of making personal quality-of-life decisions to dispelling some myths about hospice. But earlier this morning I picked up “O” magazine in the drugstore. The title story caught my attention – “Stop Worrying and Start Living” screamed at me from beside Oprah’s radiant face and her brilliant red outfit.

The gist of this issue of “O” is to get control over our worrying/fretting and stop wasting our precious time. I could relate more than I like to admit. Like most worriers, I worry a lot. And it seems we worriers mostly worry about things that are out of our control and will likely never happen. Most worry seems fueled by over-active imagination and a focus on remote things that could happen but probably won’t (i.e., contracting avian flu, my plane crashing, etc.).

I used to worry about dying. When my son was a toddler, I worried about dying and leaving him alone in his young life (even though my brother and parents would have taken excellent care of him IF something happened to me). I worried about my mom dying. If you’re a follower of our blog, you know that she’d been chronically ill my entire life, so we always “expected” that death could come any day to take her away from us. When dad had his first heart attack, I worried about him dying but I also worried about what would happen to mom who was so dependent on dad. I worried about death, as I imagine many people do, but I didn’t talk about my worries with anyone. Kept it all to myself and endured panic attacks allowing the fretting to overtake me on occasions.

You’ll see above that I said I used to worry about dying. Maybe it’s the wisdom gained from having lived 50 years, or that my son is nearly 30 and carving out his own life, or my experiences with my parents and beloved family members’ deaths, that now give me the strength to contemplate the end of my life without worry and trepidation. I’m pretty sure that some of my worry was lessened by the loss of a dear friend on April 30th. The notion of possibly seeing her and my parents again in some form is comforting. My eye-witness experiences with my mom and other hospice patients “talking” to previously departed loved ones has decreased my fear.

Obviously there are more years behind me now than ahead of me. In all reality, I don’t expect to live to be 100 after all. (I’m sure that I wouldn’t want to unless my mind and body remained sound – which is unlikely for most of us). So when I consider that I may only live another 30 years or so (assuming my longevity more closely follows that of my grandparents than my parents), I know that I don’t want to waste any more time worrying about death. It is going to happen … someday. And I will have little to no control over it. In the meantime, I can do some things that are in my control to relieve my anxiety.

I can revise my Will to provide for expenses to be paid, for my estate to be distributed, and for charitable donations to be made. I can write out documents that will bestow power of attorney to make financial and healthcare decisions on my behalf. And I can talk with my loved ones about my choices and help them understand why my choices are important to me. I can control the kind of treatment I want (or want to refuse) as my death draws near. I have written out my Five Wishes form (www.agingwithdignity.com) so that my husband (and everyone else who reads it) will know that I want my cats on my bed with me, that I want my loved ones to visit me and hold my hand and to tell me they love me even if I can’t reply. I even have things written down that seem silly in the larger scheme of D-E-A-T-H, but they matter to me (e.g., I am uncomfortable if my feet are cold, so I’ve noted that I always want to be wearing socks!). I’ve written out my wish for cremation and my memorial service program down to the scriptures and songs, and I’ve even requested that people wear brightly colored clothes to celebrate our relationships, not mourn my departure. I’ve done all of this for several reasons:

To ensure that my death experience will be as close to my desires as possible
To relieve my family and friends of the overwhelming burden of having to make these decisions on my behalf
To reduce feelings of anxiety and guilt for those whom I will leave on this earth
To be sure that those I love know it through this planning, my last loving act

Now that it’s all written down, I just need to review it each year (or more frequently). Most importantly, I need to keep talking about my preferences with those I love to help them become more comfortable with my final journey. And, finally, I can take Oprah’s advice — stop worrying and start living!

Caring Choices is ready to help you stop worrying. Take that first step – give us a call.