Un-Informed Consent.

Un-Informed Consent.
By Gary M. Votour

If you are a patient facing surgery during a major, life-threatening illness,
or you are a surgeon proposing surgery for that patient,
you MUST read this before giving or seeking informed consent.

Near the end of 2005, my wife Lyn and I were at one of the largest surgical hospitals in the country, waiting to give her informed consent for surgery to remove the second vertebra (C2) from her neck. Lyn had a congenital form of bone cancer, Chordoma. The cancer had been found in a routine X-Ray following a car accident almost a year before and we had been to a half dozen local oncologists and orthopedists before we were sent to a large cancer hospital and then referred to the surgical hospital. Traditional treatments for bone cancer like radiation or chemotherapy had been ruled out long before as too risky or ineffective.

Chordoma Cells

Doctors had told us that with Chordoma, there were only two outcomes if untreated. The first was that the cancer would travel to her head, causing fatal bone spurs to grow into her brain. The alternative was that the weakened vertebrae would simply break apart. If that happened, the spinal cord would be severed, and her brain would lose control of her heart and lungs. She would literally have dropped dead, or had her brain crushed by bone tumors from within.

After months of misdiagnosis and false leads, the doctors at the surgical hospital had finally done a biopsy of the cancer and identified it as Chordoma. This is a very rare type of cancer that only affects hundreds of people each year in the United States. Not only is it difficult to diagnose, but the small number of patients affected by it means very few doctors have experience treating it. The average life expectancy is only 5 to 10 years without treatment, and for Lyn that treatment was a C2 Chordectomy. This entailed the surgical removal of the second vertebrae in her neck, intact, through the back of her throat and its’ replacement with titanium hardware. (About Chordoma, 2008)

Lyn was very fearful of losing her mind if the cancer reached her brain, and had decided to take the surgical route. The confidence of the doctors, especially the surgeon who would be performing the surgery, led her to decide this was her only chance to live a longer life.

Yet I sit here, alone since 2008, missing her. You see the surgeries did not go well. Following the second phase of Lyn’s C2 Chordectomy an ischemic stroke deprived almost a third of her brain of the blood it needed to survive. It left her mostly paralyzed and in permanent pain. The woman who walked into the hospital with me at her side… my wife of almost thirty years… rode home in ambulances six months later. most of which we spent in the Intensive Care Unit (ICU) together. She was unable to walk or eat, with a whisper of a voice, and had a tube in her stomach for feeding, a permanent catheter for urinating, and a bag attached to her stomach where her colon had been removed due to complications during recovery. She cried in her sleep for the next three years, while I sat next to her. I was unable to do anything but manage her care in our home, which had become the ICU we thought we had escaped from. Eventually the results of that stroke, not the cancer, ended her life with her decision to stop eating and drinking. I sat by her side as she took her last breaths.

AdvocacyAfter almost 30 years together, I was left alone with a massive emotional hole in my heart that will never fully heal. For a long time, I focused on surviving the greatest emotional suffering most could ever even imagine, the loss of my wife. I waited for the intense pain of what we had gone through together to abate. Eventually I realized that my heart would always hurt from the loss I felt, and I learned I could live with that pain. I decided to instead focus on giving our experience a greater meaning. I returned to school, earned a Master’s degree in health care administration and became a Patient Care Advocate. From great adversity often come great advocates.

I try very hard not to second guess the decisions we made then to have the surgery, but I have had the most difficulty coming to terms with one lingering question… were we given the information we needed to truly allow Lyn to give informed consent? In order to answer that question, one needs a clear understanding of what informed consent is and the value it provides. I hope that by explaining this answer to patients who are facing similar choices, I can save them or someone they know from making a wrong choice. I also hope to show their doctors how to ensure truly informed consent is given.

I also write this with doctors in mind… if you are a doctor, I hope I can instill in you the desire to examine how you pursue consent from your patients. Although what I am about to say may make some of them uncomfortable, my goal is to help them to live well with the ethical ramifications of the pursuit of consent by ensuring that consent, when given, is truly an informed decision.

So let us start at the beginning. What is informed consent?

The origins of the concept of informed consent are found in the ethical principles of enhancing a patient’s wellbeing (do no harm) and the need for respecting a patient’s right to make decisions for themselves that are based on factual information (autonomy). This belief has its roots in a famous court case almost 100 years ago which stated “every human being of adult years and sound mind has a right to determine what shall be done with his own body.” The value this has comes from how it is now interpreted: that every patient “should be able to participate in decisions about their medical care, weighing the risks, benefits, and alternatives of a proposed intervention to ensure that the care they receive reflects their goals, preferences, and values.” (Meisel and Schenker, 2011)

omd0910_a09_fig01Informed consent is generally given in the form of a patient signature on a form prior to every procedure or treatment in a health care setting, from surgery to participation in clinical trials. As described by Aiken (2009), it has 8 components. The form must include the name of provider(s), the patient diagnosis, a disclosure of conflicts of interest, a description of the procedure or treatment and its purpose, a description of the potential risks, likely outcome and available alternatives and a statement of consequences of no treatment. Health care professionals have several key responsibilities when seeking informed consent. It is specifically the responsibility of the physician performing the procedure/treatment to obtain the consent, although the actual presentation of the form can be accomplished by his/her authorized agent, such as a Physician’s Assistant. Others providers (ex. nurses) can act as witness to the signature. Effort must be made to ensure that patients who speak a different language are provided with translation services. When circumstances require a third party (a spouse or other proxy holder) to give the patient’s consent, the conversation leading to that must be documented as well.

Truly informed consent requires a truthful statement of the potential risks and most likely outcomes.
What happens when we can not trust our doctors to be truthful to us, or even possibly to themselves?

In a 2009 survey of over 1900 doctors was conducted by the journal Health Affairs. They found that “approximately one-third of physicians did not completely agree with disclosing serious medical errors to patients, almost one-fifth did not completely agree that physicians should never tell a patient something untrue, and nearly two-fifths did not completely agree that they should disclose their financial relationships with drug and device companies to patients. Just over one-tenth said they had told patients something untrue in the previous year.”

That means a third of the doctors surveyed would hide an error, a fifth of them felt it was all right to mislead a patient regarding the truth, and a tenth of them admitted to lying to a patient within the last year. That equates to a fair amount of uncertainty that a doctor will always be honest even if you ask them the right questions when deciding to give informed consent. (Lezzoni et al, 2012)

So… as shocking as it is to realize some doctors will admit to lying about errors,
does that mean they would be less than truthful when seeking informed consent?

ann_dishonest_doctor_120208_wgApparently it does. ABC News in 2012 ran a story called “8 Things Your Doctor’s Not Telling You”. On the list of what they will not say is “I’ll always push surgery”. They reported that many doctors will always recommend surgery as the only option, even when studies show that some surgeries do not actually improve patient outcomes at all. “You should always ask what the alternatives are to surgery, including an approach that most physicians feel uncomfortable offering: to do nothing,” stated Christopher Meyers, head of the Kegley Institute of Ethics at California State University.  (Dailey, 2012)

All too often we make choices based on incorrect information. Lyn had been told the cancer would proceed a certain way, but my own research later shows that was not a certainty. Without evidence of growth, a Chordoma site can stay dormant for years. Despite multiple X-Rays, CTs and MRIs there was no evidence to indicate that her lesion had grown in the ten months since it had been discovered.

If it was me, I’d have the surgery.”
or
 “If it was me, I’d skip the surgery and live my life to the fullest.”

Not only were there possible flaws in Lyn’s diagnosis, there was an absence of personal opinions from those recommending the surgery. Not one doctor ever said “If it was me, I’d have the surgery.” Nor did they say, “If it was me, I’d skip the surgery and live my life to the fullest.” We did not ask them that question. We assumed that because they proposed it as a solution for her, it was what they would have chosen for themselves. And today, looking back, I believe that assumption was the single greatest mistake we made.

I recently read an article written by Ken Murray, a physician at USC titled “How Doctor’s Die.” What he had to say on this subject made me think hard on what had happened to Lyn. He wrote, “Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill persodoctor.rn near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist.”

Those are strong words indeed…
“misery we would not inflict on a terrorist.”

He is correct… when futile care is brought to bear on a terminal illness, what is accomplished? Often it nothing but pain, suffering and anguish. The last few days or weeks are spent clouded with medication to relive the pain and suffering, and often that pain is from the treatment itself. If there is no cure to grasp, no solution at hand… why then do we as patients often choose futile care rather than begin to prepare for death? I used to think it was because we are tenacious beings who simply want to live no matter what the cost. I felt that every day lived, regardless of accomplishment within that day, was important. I was wrong. This is the bitter pill of health care we all will likely face someday, either for ourselves or with someone we love… and it is simple.

Accepting death in the face of a terminal illness is not giving up. I am not advocating that everyone with an illness that is terminal should forgo treatment… That is not what I mean. What I am talking to you about here is the situation where there is no realistic treatment that will have a positive outcome. It is fine to buy more time with treatment, but I am stating that we all need to understand what the quality of that time would be when making the decision to pursue it.

hospital-300x199When a surgery has a high risk, we are making a choice between treatment and doing nothing. Would we give up up months spent living, spending time with our friends and family, fulfilling our dreams and goals, checking off the items on our individual ‘bucket lists’… in exchange for a year or two spent extension of life spent in pain, staring at a ceiling, watching those who love us suffer along with us? Sometimes that is the actual question we are answering when we decide to give consent to a treatment or not. Sometimes giving informed consent means asking yourself “Do I trust this doctor to cut me apart and reassemble me without error?” Those are the actual choices Lyn made when she gave her consent. I believe we do not always receive the information we need to make that informed consent… and we need to understand why.

Dr. Murray believes the reasons for this are three-fold: the patients, the doctors and system. Patients facing a life ending illness are scared of dying and overwhelmed by despair. Desperate for a different outcome, when a doctor offers them a choice of survival, no matter how slim it is, they grasp at it without thinking of the alternatives. If you are drowning and someone throws you a life preserver, do you look to see if it is tied to a boat or an anchor? It is hard to blame a dying patient for wanting to live and despair does cloud one’s judgment.

Then there are the doctors. Dr. Murray points out, even doctors “who hate to administer futile care must find a way to address the wishes of patients and families.“ He argues that because many doctors are poor communicators, they often find themselves in situations where they agree to the wishes of a patient and their family. They lack the ability to explain the downside of a particular treatment or course of action, and focus on the outcomes that end in success. It is, after all, a calling to save lives that brought most of them to their chosen occupation. Take his opinion along with the study I mentioned earlier… factor in that percentage of doctors who will lie about errors or give a rosier picture of a prognosis… and the blame shifts even more to them.

co-surgeons-300x198I would add that, from my personal experience, sometimes it even goes a bit further. Surgeons in large hospitals are often under extreme pressure to perform high risk procedures to gain acceptance from their peers. Even the very best surgeons are often in a competitive environment, where their fellows grant them acclaim and acceptance based upon their ability to perform complicated procedures. Being able to meet the high performance standards set by others in their own field can drive them to minimize the risks of a procedure and even overstate their own skills when seeking a patient’s informed consent. When this occurs, the patient facing a high risk surgery is not always given a clear understanding of the realistic risks of complications.

It is indeed unfortunate that Lyn’s doctors were not more like Dr. Murray. He describes his approach “…of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly.” Lyn’s doctors spoke in clinical terms like ‘transmandibular approach’ and stated a risk level no higher than any other surgery. We did not know that there were other, less risky approaches that could be used to gain surgical access to the tumor. In surgical reviews of this procedure, this approach is defined as “provides the most complete exposure, but it is a morbid procedure and is associated with the risk of complications.” (Celtiklioglu, 2001). The term morbid is defined from its Lation roots, where morbi means to “to die” and is generally defined in medicine as meaning “Adverse effects caused by a medical treatment such as surgery.” (Morbidity, defined. 2013)

Doctor’s need to supply a patient with a complete view of the risks of the surgeries they seek consent to perform. They need to use words that patients can fully understand when explaining procedures and risks, and have an actual discussion of the risks of any surgery, not simply a passing statement of the likelihood of complications.  If any of the doctors on Lyn’s consultation team had shown us the stroke care floor at the rehab we ended up in and told her she could end up there, I am certain she would have taken those few months or maybe even years walking, talking and living instead.

Then there is the system itself. Once again, Dr. Murray sums it up. “In many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.”

All of this leads me to one inevitable conclusion, the one and only answer to the question that plagues me still.  Lyn didn’t say no to the surgery because she had truly no idea what could happen.

Back we go to that day a little over six years ago when they explained to Lyn what the surgery entailed while seeking her informed consent. Using clinical terms like ‘transmandibular approach’, barely discussing the elevated risks, and never once discussing the alternatives, Lyn was not told whether they would have the surgery themselves if faced with this diagnosis. I know we did not ask, but we did not know enough to be able to. They did know the risks and the high likelihood of failure and complications, and had an ethical obligation to tell Lyn what they knew. But they did not do so.

imag014Consent was given that fateful day,
but it was not an informed one…
and there’s my answer.

I just wish I could accept it. I can understand now why Lyn made this choice, but that’s only because in hindsight I have knowledge that comes from study and wisdom that comes from experience. All I can do now is help others not to make the same mistakes, and if they do help them improve their outcome. As patients we are evolving into far more educated consumers. As more educated consumers, we are demanding transparency and the truth that comes along with it.


I am not alone in this belief. David Mayer, a doctor who speaks about the growing need for transparency, sums up this need quite succinctly. He writes, “[Our patients] want Transparency in outcomes. …They want Transparency in shared decision-making. Informed consent doesn’t cut it anymore. More and more patients want their caregivers to fully understand their values, preferences, needs and goals before any discussions on care options, risks, benefits and alternatives begin. They want information on the hospital and their physician’s experience related to the procedure they will undergo–more succinctly–how many similar procedures have we performed, and how well have we done? They want to know our infection and complication rates. And more and more patients also want to understand the costs related to different treatment options. … It is my opinion these new patient demands for transparency have been long overdue, are badly needed, and will help move us to a more cost-effective, higher quality, lower risk patient care model. It will be a new and better health care system, but history has taught us change will not come easily or quickly.”

He also instructs doctors on how to better reach out to their patients. “…When you enter a patient’s room, instead of standing at the foot or side of the bed (as I had done for so many years) pull up a chair, sit down and have a true conversation with them. Research has shown that patients perceive caregivers who did this to have spent twice as much time in the room with them, versus a comparison group of physicians, who actually spent the same amount of time with the patient, but stood at the foot of the bed while talking to them.”

So I say, veteran_with_doctor_bedsideon behalf of Lyn and all other patients who have given un-informed consent, to every doctor:

Sit next to us, and explain it to us
as if was you lying in this bed.

Tell us if you would have this surgery or treatment yourself whether we ask the question or not.

Remember we are desperate to survive our
illnesses and injuries and may not think to ask.

Above all else, tell us the truth.


Sources

About Chordoma. (2012). The Chordoma Foundation. http://www.chordomafoundation.org/chordoma/

Aiken, T. (2009). Legal and Ethical Issues in Health Occupations. St. Louis: Saunders Elsevier.

Celtiklioglu, Feridun. (2001). A new case of a branchial cyst of the parapharyngeal space. Ear, Nose and Throat Journal. June 1, 2001 http://www.thefreelibrary.com/A+new+case+of+a+branchial+cyst+of+the+parapharyngeal+space-a076877194

Dailey, Kate, 20120. “8 Things Your Doctor’s Not Telling You”. ABC News, April 20, 2012 http://abcnews.go.com/Health/Wellness/things-doctors-telling/story?id=16175754

Lezzoni, L., Rao, S., DesRoches, C, Vogeli, C and Campbell, G. (2012). Survey shows that at least some physicians are not always open or honest with patients. Health Affairs. February 2012, vol. 31 no. 2 pp.383-391. http://content.healthaffairs.org/content/31/2/383.abstract

Mayer, D. 2013. Sitting Down with Patients. Educate the Young. March 18, 2013. http://educatetheyoung.wordpress.com/category/patient-advocacy /

Meisel, A. and Schenker,Y. (2011). Informed Consent in Clinical Care: Practical Considerations in the Effort to Achieve Ethical Goals. Journal of the American Medical Association. AMA. 2011;305(11):1130-1131.

Morbidity, defined. A Wiki based open content dictionary. June 7, 2013.
http://en.wiktionary.org/wiki/morbidity

Murray, K. (2011). How Doctors Die: It’s Not Like the Rest of Us, But It Should Be. California HealhCare Foundation, Zocalo Public Square. http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/

Suicide and Hell

Suicide and Hell
by Gary M. Votour, MHCA

In about two months it will be four years since my wife ended her own life. I still grapple with one very large question… does the act of ending one’s own life condemn us to an eternity of suffering? I believe the answer depends on what you hold as your own spiritual beliefs.

In the Roman Catholic Church, with its strict and literal interpretations of the Bible, the answer would be yes. They believe that suicide is a mortal sin, and that to die with unforgiven mortal sins condemns one to hell instead of heaven. They also hold as truth that Christ conferred the power to forgive sins only upon the apostles and their successors. Anglican and Eastern Orthodox Catholic churches generally agree with this position.

Since this view holds that only the Church itself can forgive sins, a person must do all that they can to ensure one enters eternity with the Church’s forgiveness for all their sins. This is why they administer “last rites” to those who are dying. Since the act of suicide would presumably take place after any possible administration of “last rites”, eternity is entered with unforgiven sins.

The Protestant Christian view of sins and how they are forgiven resembles the actual scriptures more than that of the Catholic position. Protestant denomination believe that the actual scriptures hold greater authority than that of any church. They direct one to Christ as the only true redeemer of mankind and his sins. The Evangelical Christian view holds that all sins are forgiven the moment one accepts Christ as savior. This includes all sins, past, present and future.

This view is mine. I look in the Bible and I find these words that support it:

“For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.” – John 3:16

“For whosoever shall call upon the name of the Lord shall be saved.” – Romans 10:13

“For by grace are ye saved through faith; and that not of yourselves: it is the gift of God: Not of works, lest any man should boast.” – Ephesians 2:8-9

So we can see that one’s own beliefs and interpretation of the Bible must be what shapes the answer to this question. Let us return to the core question… does the Bible itself hold that suicide is justifiable at times?

I believe that the answer is yes, it does.

One specific instance is when the suicide is an act of redemption. Samson, a wayward Israelite judge, had allowed himself to be compromised and imprisoned by Israel’s enemies. His prayer and subsequent suicide appear to be pleasing to God because he was acting to atone for his transgressions. Another specific instance would be a soldier in combat who throws himself in the line of fire to save his comrades in arms. So atonement and selflessness would seem to be justifiable reasons to end one’s life.

Those instances do not apply to one who chooses a subtler form of suicide to end their own suffering, but since there are clear exceptions to the rule, there is room to explore further to find the answer. After all, where there is one exception there must be others.

What about the terminally ill, who have no hope of living and can not expect a high quality of life for what life remains? We accept that foregoing treatment and choosing hospice care is not a sin. It is simply a choice to let an illness run it’s course. See my previous post about the existence of hope in hospice care for more about that at https://fierceadvocacy.wordpress.com/2012/02/22/is-there-hope-in-hospice-care/

Going a step further, what about a person who is stable medically but in constantly increasing amounts of pain? Is it a suicide to stop eating and drinking and let starvation end one’s own life? If it is, does that constitute a sin that will condemn one to hell?

I’ve read a lot on this issue,
and there are no clear answers.

I only know what I know in my heart,
and that is where the answer, for me, must be.

My wife, Lyn, suffered greatly following a surgical stroke that left her mostly paralyzed. The surgery was to delay a congenital form of bone cancer that would have been fatal within a few years. The stroke destroyed parts of her brain that controlled motor control, pain perception and emotional control. After six months by her side in three hospitals, we had returned to our home, which was now an Intensive Care Unit. With 100 hours of staff coming and going weekly, I managed her home care for over two years. In that time she made great strides in recovery… she regained her voice and could eat some solid foods again. She would never walk. She would never smile. Worst of all, the pain she felt continued to increase to the point where to control it, she was practically sedated most of the time.

She fought for 27 months to recover as much as she could, despite the pain.  Awake and alert for only a few hours each day, she eventually decided to stop eating and drinking. She made us stop the tube feed. She said her goodbyes. After two weeks, she took her last breath with friends and myself at her side.

I have at long last concluded that she went to heaven, and no one can tell me otherwise. She had time to make her decision. She had the ability to decide for herself. Her death was not an act of redemption. It was not an act of selfless valor. It was simply what came next. Once no more progress in recovery could be made, she decided what was left of her life was not worth the pain and suffering that each waking moment caused her. So she simply stopped living. Although her technical suicide was a sin, it was forgiven before it was ever committed.

Christ loves us that much.
That is my belief, as it was hers.

When One is Sick, Two Need Help.

When One is Sick, Two Need Help
by Gary M. Votour

Introduction

Spousal caregiving is defined as a spouse who provides the majority of care and support for an ill partner for any length of time exceeding a few months. Because this is generally a financially uncompensated (unpaid) role, it is categorized under the term informal caregiving. Spousal caregiving is a difficult thing to recognize or support within the community, as it is often done quietly and in private. Spousal caregiving saves our society a great deal of resources, especially money. Despite how it helps keep health care costs lower for everyone, all too often it is unsupported by the community. After examining some statistics and identifying several important issues, I will set forth some ways that communities can provide more assistance.

Informal Caregiving Defined

What is informal caregiving?  Informal caregiving is the term used to define the unpaid support and help given by friends and family members to people who are either temporarily or permanently unable to function independently. Caregiving is best described as the process of providing support to another person that involves a wide range of activities. This can range from emotional support to direct assistance with personal hygiene. Informal caregivers are rarely paid for what they do and generally have no training that helps them learn how (LA Health, 2010).

Informal Caregiving Value

An estimated 40 million American over 18 years of age have provided unpaid care to another adult in the preceding year. Informal caregivers now provide 80% of the long term care in this country. When considering the financial value this care provides as a component of the larger picture of health care in this country, it is important to consider this one simple fact: During 2007, informal caregivers provided $375 billion or approximately 2.7% of the U.S. Gross Domestic Product (GDP) at no direct cost to society or health care insurers. That amount exceeds the money spent by federal Medicare and state Medicaid programs combined. The increase in informal caregiving is being driven by shorter hospital stays and increased usage of outpatient procedures, both of which are changes being made in this country’s health care system designed to increase profits for health care providers and insurers (LA Health, 2010).

Informal Caregiving Statistics

In 2007, the Los Angeles County Health department surveyed adult caregivers. They found that 16% of adults reported themselves as being informal caregivers.  Most informal caregivers are between 50 and 59 years old (21.3%), and one-third of all care-receivers live with their caregiver (33.2%).  Nearly one out of every ten caregivers are caring for their spouse or partner (9.8%).  Almost half of caregivers reported that the person they are caring for depended on them for assistance with two or more of the following activities of daily living (ADLS): transportation, eating, toileting, bathing, dressing or taking medication (45.7%) (LA Health, 2010).

Maintaining their own health status is a primary concern amongst informal caregivers.  Often referred to as the “Caregiver Burden”, adult informal caregivers are highly susceptible to a state of physical, mental and emotional exhaustion due to the intense demands of caregiving.  This is due to the fact that caregivers have a hard time recognizing their own needs and seeking help for their own exhaustion and frustration, which in turn puts more strain on their health (LA Health, 2010).

The National Family Caregiver’s (NFC) association reports similar findings from their own surveys of family caregivers.  The NFC also reports that 3 out of 4 caregivers report they do not go to their own doctor as often as they should, and over half of caregivers admit to skipping doctor’s appointments for themselves. NFC also found that 6 out of 10 caregivers describe that their own eating and exercise habits become significantly worse after they began caregiving. Over half of family caregivers exhibit clinically significant symptoms of depression, and many of them meet the diagnostic criteria for major depression. One of the most significant findings is that studies have shown that the constant stress combined with the lack of self-care caregivers experience can cause premature aging, often taking up to ten years off their life (NFC, 2011).

Spousal Caregiving Defined

Spousal caregivers are a subset of informal caregivers who are caring for a spouse or partner. They have a complex set of emotional issues that need to be addressed in addition to the physical health concerns. As mentioned previously, an important component of long term caregiving is called “self-identification”, where the caregiver realizes and adjusts to their new role. A spousal caregiver and President/CEO of the National Family Caregivers Association, Suzanne Mintz discusses her own self-realization.

“By identifying ourselves as family caregivers, we are in a position to fight for our rights, to begin to change the way society regards us, to start feeling better about our situation because we are identifying it for what it is-a painful job that we are so often asked to do alone, regardless of physical, emotional and financial costs. For too many years I did not have a name for what had happened to my life when my husband Steven was diagnosed with Multiple Sclerosis. For too many years I was angry and unable to be comfortable with myself.” (Mintz, 2010).

Self-Identification of Spousal Caregivers

Richard Anderson, past President of the Well Spouse Association, sums up the needs of spousal caregivers by quoting the motto of Well Spouse, “When one is sick, two need help.”  His experience as a spousal caregiver is typical of other long term spousal caregivers  (Well Spouse, 2010).

“My story, like that of so many spousal caregivers can be summed up by a mantra I adopted: WIT: Whatever it Takes –i.e. resilience in the face of many difficulties. Married to Vivienne for 31 years, I was her caregiver for 29 years. In the first decade she had many symptoms of a baffling illness that was finally diagnosed in 1985 as an auto-immune disorder, scleroderma, in a rare form that affects the internal organs. She died in 2004, only 1½ years after a diagnosis of liver cancer. Although some estimate that 80% of marriages in which one partner receives a diagnosis of chronic illness and/or disability break up, ours did not. She loved me and I loved her and remained committed the whole way through. But it got harder and harder. Change was a constant in our lives, mostly from her illness, and fatigue and other symptoms can strip the intimacy from a marriage, and turn it into more of a parent-child relationship. I felt increasingly alone, I had the feeling that so many caregivers have, that no one understands their situation. Self-identification — recognizing that one is a caregiver — and reaching out for help are difficult for many caregivers. Men take longer than women to do both. And of all family caregivers, spousal caregivers take the longest – due to the more intense nature of the intimacy relationship.” (Anderson, 2009).

Anderson speaks very eloquently on the self-identification problem, often referring to it as the “Keep it all Going, Superman” syndrome.

“Of all family caregivers, spousal caregivers are the last ones to recognize that they actually are doing caregiving. They can go on an incredibly long time picking up the pieces of the household tasks: cleaning, cooking, finances, shopping, as well as helping the ill partner in bouts of illness, or taking them to and from doctor’s appointments and hospital visits… and all this while holding down a full-time job, and sometimes moonlighting at another one as well to keep the finances from totally dwindling. But no, they don’t even consider they are caregivers. They are doing it out of love or duty, and somewhere along the line they lose themselves, and become absorbed by the battle against their spouse’s illness. This is the Superman complex and inevitably, it leads to a crisis point and burnout or even breakdown for the caregiver.” (Anderson, 2009).

Anderson also writes at length about what differentiates a spousal caregiver from other family caregivers. He identifies several key areas of concern.  First of all, spousal caregiving comes from a starting point of great intimacy, and it usually involves a loss of that very intimacy.

“This is probably the sine qua non of the spousal caregiver relationship. No other caregiver – whether of a parent, a child, a friend, a sibling or other further removed relationships starts out with the close intimacy that a couple has, right from the start.  And for spousal caregivers and their ill husbands, wives or partners, the almost universal experience is a loss of intimacy in the relationship. Whether they take note of it, or repress or deny it, this adds another layer of stress, from grieving the loss of the close relationship.” (Anderson, 2009).

Another major difference identified by Anderson is the financial impact that spousal caregiving brings. Most family caregivers live in two-income families, but for the spousal caregiver the norm is one income. Major out of pocket expenses for uncovered medical costs are also more common (Anderson, 2009).

Not all spousal caregivers work through a long period of adjustment followed by a more stable ‘self-realized’ role that lasts for years. Many spousal caregivers are caring for a person who has no hope of recovery from illness or even the possibility of anything but a steady decline in health, leading to a shift from home care to palliative care and home hospice, followed by death.  Since a spousal caregiver is taking care of their partner in life, it often becomes an intimate involvement in the end of the life of that most meaningful person in their life as well. The New England Journal of Medicine reports that there is a significant increase in death rates for spouses when their partner is hospitalized for a serious illness. More importantly for spousal caregivers, there is an even more significant increase in surviving spousal death rates that occurs after illness causes the death of their spouse (Allison and Christakis, 2006).

Compassion Fatigue

Compassion fatigue is a new term used to describe the secondary traumatic stress disorder experienced by many spousal caregivers.  The Compassion Fatigue Awareness Project (CFAP) is an excellent resource for spousal caregivers. They are working to raise caregiver awareness of the possible impacts that caring for a loved one can have on the caregiver. They define the signs of Compassion Fatigue clearly.

“Compassion Fatigue symptoms are normal displays of stress resulting from the care giving work you perform on a regular basis. While the symptoms are often disruptive, depressive, and irritating, an awareness of the symptoms and their negative effect on your life can lead to positive change, personal transformation, and a new resiliency. Reaching a point where you have control over your own life choices will take time and hard work. There is no magic involved. There is only a commitment to make your life the best it can be. ” (CFAP, 2012)

CFAP lists specific symptoms on Comapssion Fatigue, which include excessive blaming, bottled up emotions, isolation from others, substance abuse to mask feelings, compulsive behaviors, poor self-care, apathy and sadness,  and mental and physical tiredness. They have created a caregiver’s Bill of Rights that helps the process of self-realization and healing. (CFAP, 2012)

Strategic Solutions

The successful support of spousal caregivers can be broken down into several layers. Starting with individual action, it is important for spousal caregivers to feel as if they are not doing this alone. They often feel guilty about asking others for help. They often feel a need to keep their own pain to themselves, redirecting sympathy and concern to their spouse. Friends and family can help them with the process of self-realization by encouraging them to discuss it and helping them maintain their own physical and mental health. Simply being there when the spousal caregiver needs someone to talk too, or offering them a ride to a doctor’s appointment of their own, can make all the difference (LA Health, 2009).

Anderson feels that it is also the responsibility of those who have been spousal caregivers to explain this to others.

“Keeping it in the marriage, not talking, not realizing they are caregivers and need to take care of their own spiritual health… is it any wonder that spousal caregivers are under-recognized? A familiar complaint is, many people ask the caregiver ‘how is the ill spouse?’, but don’t ask how the caregiver is. ‘Is he/she better yet?’ is the cry from some, which shows a refusal to acknowledge the ever-presence of chronic illness. So, we need to come out of the closet, so to speak, tell friends, family, and workmates of what our needs as a caregiver are, so that they will know better how they can help.. And yes, there are a lot of good people about, who are willing to help. They just need to learn about the need, and then be asked!” (Anderson, 2009).

Government agencies, community-based organizations and employers can help ease the burden of spousal caregiving as well. They can help by actively educating the public concerning the health and financial consequences, and by increasing the availability of support and education programs. Health officials can develop care interventions designed to identify caregivers as patients, determine their specific needs and connect them with the support services they need.  Health professionals can participate actively in efforts to raise awareness of the importance of identifying the signs of depression and psychological distress in spousal caregivers who are their patients, and to ensure they have access to mental health services (LA Health, 2009).

At the highest level, policy makers across the U.S. need to recognize both the financial burden and the emotional stresses that are placed on spousal caregivers. Employer policies that allow for flexible work and telecommuting options for spousal caregivers can be a great help.  Tax credits for employers who provide job protection for workers who leave the workforce to become spousal caregivers can give them something to return to. The Family Medical Leave Act should be expanded to include domestic partnerships. Medicare and Medicaid should provide reimbursement for providers of spousal caregiver respite services (LA Health, 2009).

As the population of this country continues to age and life expectancies continue to increase, the need for spousal caregivers increases accordingly. Local, state and federal government can recognize and support the immense contribution of spousal caregivers by following the strategies recommended here.  Community health organizations can help by placing an emphasis on the health of spousal caregivers as patients themselves. Most importantly, friends and family can make sure that spousal caregivers do not feel alone. Communities, friends and families simply need to remember that “When one is sick, two need help.” (Wellspouse, 2010).

References

Allison, P. and Christakis, N. (2006). Mortality after the hospitalization of a spouse. New England Journal of Medicine. February 16, 2006. 354:719-730. Retrieved from http://www.nejm.org/doi/full/10.1056/NEJMsa050196#t=articleDiscussion

Anderson, R. 2009. The life of a well spouse. CarePages. Retrieved from http://www.carepages.com/blogs/lifeofwellspouse/posts/april_23_2008

Compassion Fatigue Awareness Project (CFAP). 2012. Retrieved from http://compassionfatigue.org/index.html

LA Health. 2009. Informal caregiving: implications for public health. County of Los Angeles Public Health. February, 2010. Retrieved from http://www.lapublichealth.org/ha/HA_ALPHA_REPORTS.htm

 Mintz, S. 2010. The importance of self-identifying as a family caregiver. National Family Caregivers Association. Retrieved from http://www.nfcacares.org/who_are_family_caregivers/suzanne_mintzs.cfm

NFCA. 2010. Caregiver statistics. National Family Caregivers Association. Retrieved from http://www.nfcacares.org/who_are_family_caregivers/care_giving_statstics.cfm

Well Spouse Association. 2009. About Well Spouse. Retrieved from http://www.wellspouse.org/

Is there Hope in Hospice Care?

Is there Hope in Hospice Care?
By Gary Votour, MHCA.

What is hope? Hope is desire accompanied by an expectation of or belief in fulfillment. One can use the word as a verb (I hope for something) or a noun (I have hope I will find something). Does the move from recovering from an illness in a hospital to anticipating the end of life as a hospice patient entail giving up hope?

Hospice care in this country is a relatively new branch of medicine and health care. As it continues to evolve, new dimensions to its core function are being addressed by the medical community. One of the areas of recent research is the ways in which a hospice care provider can provide spiritual support to patients who are approaching the end of their lives.

Traditionally, Western medicine has adopted a view of detachment from the religious or spiritual explanations of illness and cures. Biomedical approaches focus primarily on the physical body and its diseases and illnesses and adopt a scientific view of both. At the same time, most acute care providers have chaplains who strive to bring spiritual comfort and hope to patients in times of illness.  This creates a tension between traditionally trained care providers who have been taught to disregard the spiritual needs of their patients in favor of a clinical view and those who have adopted a profession of providing spiritual hope to those same patients.  (O’Connell, 2001)

Hope is an important aspect of spirituality. The hope for a cure or a rapid recovery is its most common manifestation in acute care settings. In hospice, that hope often becomes a hope for an afterlife as death approaches. Hope belongs in the intersection of clinical and existential concerns… and as a patient moves from one to another, a sense of hope is often what binds one to the other.

Figure 1. Domain of overlapping clinical and existential concerns.
(Josephson and Peteet, 2004)

Hope and Hospice Care

Patients who are facing death draw hope from a number of sources, most importantly from their own individual spiritual view of the world. By developing a better understanding of the worldview of a hospice patient, care providers can better provide the spiritual support a patient needs to maintain hope. Hope may be as simply as wanting a pain free end to a life cut short by illness or accident. Hope may be as simple as wanting time to bring your mortal affairs to an end. Hope may be as simple as needing time to reflect and prepare oneself to meet their creator or move into a new life in different world.  (Moll, 2010)

A spiritual worldview that includes hope helps bring a patient closure to mortal affairs and an acceptance of death in anticipation of a spiritual afterlife. For each patient, hope is different.  The job of the care provider is not to decide what a patient should hope for based upon their own beliefs or perceptions, but to discover what the patient believes and provide support for that belief.

As a patient moves into hospice care, a shift from a world of authority to one of autonomy occurs. In an acute care setting, authority is given to the doctors and other care providers to act on one’s behalf. This authority is reinforced by a world of white coats and clinical settings.  The decision to accept one’s death goes against that world, and doctors in particular often feel they have failed a patient if they choose to pursue hospice care and forego treatment for a fatal illness.  The guilt that feeling of failure creates often leads a doctor to make a patient feel as if they have somehow failed the doctor if they choose hospice… but it is the patient’s choice to regain autonomy, and it is their right to do so when and how they choose.   For many patients, hospice brings a period of peace and a release from pain before they die. That time is worthy of hope.  (Moll, 2010)

Hospice is a philosophy of care where the emphasis is on the quality of life, not about prolonging its length.  Those that provide hospice care are touched by death over and over, and often they begin to lose hope themselves. They disconnect, become clinical and forget that part of their job is to help their patient hold on to hope.  For them I offer the following quote by Rob Moll, author of The Art of Dying.

“As anyone who has observed a good death can attest, it is in many ways a life changing event for those who watching. While tremendously sad and even horrible, a good death can be beautiful and deeply moving. … There is less mystery as we see how the physical body ceases to function. There is less fear as we see caregivers assist the dying in their last moments. There is more hope as we watch, even for a moment, the veil lifted and a dying person drawn into eternity. When we’ve seen a friend or loved one die, it’s easier to learn to die.”

Is there hope in hospice care?

Of course there is.

It’s at the very core of it.

It is even in the word itself.

One simply has to look for it

to find it there.


References

Josephson, A and Peteet, J. (2004) Handbook of Spirituality and Worldview Clinical Practice. Arlington, VA. American Psychiatric Publishing, Inc.

Moli, R. (2010). The Art of Dying.  Downers Grove, IL. InterVarsity Press, Inc.

O’Connell, L. (2001). Integrating spirituality into health care near the end of life. Innovations in End-of-Life Care. USA. Education Development Center, Inc.