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Back to Basics: Are we losing sight of what hospice care is all about?

by Amy Getter,
A hospice nurse who blogs regularly at www.hospicediary.com

In our ever-challenging and changing medical system, the current hospice and palliative care movement has undergone heightened scrutiny, increased regulatory stipulations, and in general has become a part of the federal government’s health care crisis (just review Medicare Conditions of Participation and billing requirements to get a head full of terms and guidelines to be overwhelmed by it all). Yes, hospice has become big business.

I am a hospice nurse. I have seen the changes in the past decade, as Medicare requirements become more stringent and hospice has moved from grassroots to mainstream; and the “evidence-based practice” mantra has precluded use of medications and treatments that have historically been effective but now lack current “research validation”. Or new results from a few cooperate-funded studies who have the most to gain by predetermining that certain treatments are not effective change our practice, and I can’t help but wonder about bias. Or large pharmaceutical companies, (providing much of the funding sources for many of the studies on medications), suddenly phase out older medications that are not profitable. Or politics become involved in deciding things like what opioid medications should be approved for public use and how people’s choices at the end of life must be managed by laws and public approval.

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And I must pose the question, “Are we losing sight of what hospice care is all about?” I see younger nurses coming into the hospice profession, and learning about “best practice”, being taught that the “experts” know best. That “evidence based practice” is THE answer.

I am reminded of the middle of the last century, when birthing practices became managed and performed by experts in white coats in medical facilities, new technology and expert roles slowly removing the simplicity and normalcy of birth. I am not trying to over-simplify a complex experience, truly: not every birth and death is uncomplicated and many need to have advanced medical care. Thank goodness for advances and treatments that were hitherto unknown! But I am advocating that we not have total reliance on the science of death and dying, remembering how both birth and death have sacredness and mysticism that cannot be quantified. For centuries, birthing and dying are the human experience. Is it really only now, with our medical advancement, that we know how to provide ease of suffering in both states of humanness?

I heard, again, from hospice staff this week, how a family should let the patient be transferred out of the home and placed “where experts in end of life care could care for him”, while the loved ones could just be “the family”, coming to visit and sit at the bedside. And I was a little horrified, that we, the hospice “experts” are succumbing to the lie that caring for the dying is so complicated and combersome, we must rely on “experts” to provide the answers and often even the care. I do not believe we, “the experts”, can provide the same level of solace as a person who has loved a dying family member all their lifetime. I am and always will be an advocate for the patient and family, with the conviction and goal in hospice nursing to create confidence in family members. They can be the ones who comfort and care for their own dying loved one in their own home whenever possible. Isn’t that what most of us hope for, when we die, to be at home with family?

For centuries, caring for the dying relatives was a part of life lessons taught while children grew up in multi-generational living environments, and saw the normalcy of caring for ones’ elders through the lifespan. I like to believe that the basics of care for a dying person can be taught in an atmosphere of simplicity and loving kindness, and the gift that family receive from providing the care is a part of the lasting memorial to that loved one. In fact, this has been my experience time and time again.

I empathize with wanting to standardize and compartmentalize dying, we all would like to have it tidied up and handled for us. It might seem more palatable in the white halls of the medical experts. But I am certain that dying will always involve the messiness and unexpectedness that birthing also entails. Nor does the current body of evidence preclude learning from centuries of how people die.

I am, and will always be, thankful to my dying patients, the only ones actually experienced in dying, who have shown me time and again to STOP, leave my agenda behind, LISTEN to their hopes and desires, and bring perhaps some insight, but not all the “answers” to their bedside. After all, as I have said before, I might be the hospice nurse, but THEY are the experts.

REPOSTED WITH PERMISSION FROM THE AUTHOR

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Medications: The Good and the Bad

By Gail Lowenstein MD     GUEST BLOGGER


I have a rule: Any change in any elderly person: the top 3 reasons are:
1. Medication
2. Medication
3. Medication

This includes medications that have been recently discontinued: I was called to recommend a nursing home for an 88 year old woman with dementia. She had become paranoid and was accusing her husband of poisoning her. The elderly husband could no longer handle his wife in their home. The patient was not on any medications that were likely to cause this new behavior. However, an anti-depressant had been recently stopped abruptly. It turned out that paranoia was from the withdrawal syndrome from suddenly stopping the anti-depressant. The patient never ended up going to a nursing home and was able to be managed at home.

We have become a pill-popping society:
“When Life Just Blows…Fukitol!”

More people die from medical errors than from cancer and a disproportionate number of those who die or end up hospitalized are aged 85 and over. Adverse drug reactions occur in 6% of those who take 2 medications, and in 100% of those who take 8 or more medications. The average elderly person takes 2 – 6 prescribed medications and 1 – 3 over-the-counter medications. If medication-related problems were ranked as a disease, it would be the 5th cause of death in the United States – more than from motor vehicle accidents, breast cancer, or AIDS (The Institute of Medicine Report: To Err is Human 1999).

Over-the-counter medications can be as dangerous as prescribed medicines: The number of people killed from medicines like Advil, Motrin, Naprosyn (class of medicines known as NSAIDs) is greater than the number of people who died from the Revolutionary War, War of 1812, Mexican War, Spanish-American War, World War I, Korean War, Vietnam War, and Persian Gulf War combined! (Roman Bystrianyk 2010)

There are alternatives to medications: People would be better served to take responsibility for their own health through choices they make in what they think, eat and do. When we truly take on this responsibility, we become artificers of our own destiny, rather than victims of a dreaded disease and a health care system fraught with unnecessary interventions, medical errors and known adverse reaction.


 

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Dr. Gail Lowenstein is a Western-trained physician with board certifications in internal medicine, holistic medicine, wound management, hospice and palliative medicine, and geriatrics. She offers a unique perspective that integrates contemporary Western medicine with complementary and alternative medicine.

www.gailmd.com

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2015

1/1/15 New Years Resolutions

Everyone speaks about their New Year’s resolutions at this time of year.  Most are to lose weight, spend more time with family. Others may want to pursue a degree.  Mine is more of a five-year plan and I feel if I kiss it up to cyberspace maybe it will go somewhere.

Hey, you never know.

My goal is to add Advance Care Planning to the nursing, social work, pastoral care and the legal curriculum.  I am sure this will not be an easy process.  I remember in a previous position I held the dean felt that having advance care planning as part of the curriculum was unnecessary and was something to be discussed in a Bachelors program.

Patients being cared for by Associates degree nurses don’t require assistance with Advance Care Planning?   Another college I presented my vision to felt it was too political.  Nursing has politics and public health is a political issue.  This is a serious public health issue that affects us all.  Of course it is political and it is our charge as health care professionals to address this issue.

I would like to start with where I am currently working.  I have in the past provided grand rounds to the doctors but this year I want to deliver Nursing Grand Rounds.  I would like to collaborate with other health systems as well.  I want to provide continuing education to their health care professionals and allied health care professionals on this topic including the patient advocates.

I also feel that if our nurses, our largest body of health care professionals, had a broader understanding of advance directives and the advance care planning process, patients would be better equipped to face a time where they may not be choosing for themselves and if our nurses are better equipped aren’t our patients getting better care.  Patient satisfaction increases if patients are receiving better care.  If our patients are getting better care, the hospital scores improve which increases reimbursement.  A positive experience all around.

 

 

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Bacteria: The Gift That Keeps on Giving

Bacteria: the gift that keeps on giving and hospital acquired infections a gift that you can re-gift but you would rather just return.

 

On two occasions in this past year family members were gifted with infections compliments of our wonderful New York hospitals.

The first family contracted this “hospital acquired” infection during a hospitalization for surgery.  The fact that this person developed the infection was not surprising to me (though I wish that this was not a common issue).  More surprising to me was the way the infection was handled by the health care professionals.
I was 6 months pregnant and it was obvious that I was pregnant.  No one stopped me from going in to the room.  In fact I was encouraged to go in.  I was given a gown and gloves.  No education was provided.  No one said anything when my step-mother came out of the room gown and gloved and proceeded to touch my jacket and other surfaces that had items that may be used for other patients.  What happened to infection control? What happened to protecting the patients?

Health care practitioners are afraid to educate patients and family members on proper infection control practices for fear of being verbally abused by family members and fear of family members complaining?  Those family members are complaining about reasonable requests from health care practitioners.  When I had spoken with some of the nurses and asked why they were not providing this critical information they said essentially the complaints and the snide comments have deterred them from making proper recommendations.  In their defense how many times do you want to get verbally kicked, insulted, abused before you just don’t say anything anymore.

We are living in a world where reimbursement is related to how patients are catered to, not necessarily cared for.  First, the news networks became all about the ratings, now health care is following suit.  Health care is not like every other business and our health care system is suffering for it.

Our hospitals are providing infectious disease distribution – not infection control.

The second family member acquired  a virulent infectious disease called C-diff while he was in the hospital.  My husband and I were over a day prior to the hospital notifying the family of the infection and we were touching him.  We have a newborn at home and I was concerned about our son’s health and safety.

The incubation period of C-diff is unknown.  It can last on surfaces for 7-10 days Generally C-difficile does not effect healthy people. “Generally” is the operative word.  I know of 3 friends/colleagues who had healthy immune systems who contracted C-diff and faithfully distributed it to their family.  Families are kind to each other, they share.

I instructed my husband and all family members to wear gown and gloves when visiting our family member.  As I walked in the hospital room and went to take a gown and gloves from the supply cabinet, I was instructed by the nurse that there was no need for me to wear a gown in the room since I am a family member and an not providing personal care, these type of precautions are unnecessary.  This was reinforced by the pastoral care professional. I find that comment odd coming from the pastoral care professional.  I didn’t know that pastoral care was trained in infection control education (I am being sarcastic).  Why was the pastoral care professional wearing gown and gloves?  Do pastoral care professionals now provide personal care? Furthermore why did she come over to comfort me and touch me while wearing her gowne and gloves.  This not only doesn’t seem right it is completely wrong!!

How does the hospital know?
1) That I in fact have a healthy immune system;
2) That someone I live with or have close relationships with has a healthy immune system.

You are permitting me in the room without personal protective gear under the guise that I am not going to touch anything specifically the patient?  What responsibility does this hospital have to me if I become ill because they are not providing me with the requisite education?  How about the responsibility the hospital has to my family or people I love that I come in contact with after I leave the hospital and perhaps don’t wash my hands properly or brush a contaminated surface or how about the pastoral care professional touching me with contaminated gown or gloves and I touch, say my son.

I called the infectious disease department and expressed my distaste for the failure to educate and the misleading information that I was provided.  I expressed my concerns.  The head of the infectious disease department informed me that the CDC guidelines are not prescriptive and informed me that “everyone” who went in the room was provided information on the bacteria and how to prevent transmission.  I told her that my family member did not receive this documentation and I did not either.  My family member was provided this information later that day.

The take home message is:  Do your own homework as you may be exposed to gifts you would much rather return and not regift.

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7 Mindful Practices for Caregivers ~
        Meditation and Breathing Methods

By Mia Borgatta GUEST BLOGGER

We often think that spiritual practice can only exist in a formal setting or for a prescribed amount of time, but it is possible to impact the quality of a day by being mindful with simple practices throughout the day.

 

Gratitude
Giving Thanks is a good starting place for spiritual practice– gratitude for the day, a new endeavor, for those that we love, for life itself, for nature. Slow down and take a few moments for an offering of
gratitude repeatedly throughout your day.

Take a Pause
“The pause practice—the practice of taking three deep conscious breaths at any moment when we notice we are stuck—is a simple but powerful practice that each of us can do at any moment.” — Pema Chodron

Coherent Breathing
During the course of a busy day, the breath can become unconscious, rapid, uneven, or even held. Slow breathing benefits health of the body and the mind. It may take some time to slow down, but the rate of 5 breaths per minute is optimal, but begin by adding a single count or a couple of counts to each inhale and exhale and over time work your way towards whole deep breaths.

Heart Meditation
Step 1: Heart Focus. Focus your attention on the area around your heart, the area in the center of your chest. Step 2: Breathe deeply but normally and feel as if the breath is coming in and out of the heart area.
Step 3: As you maintain heart focus and heart breathing, activate a positive feeling.

Walking meditation
There are many ways to do walking meditation – a simple way is to turn your attention to the contact of the bottom of your foot and the earth as you step. Another method combines walking and breath – inhale for 4 steps and exhale for 4 steps.

Body Scan
Many traditions include a scan of the body from feet to head. Starting with a few centering breaths, and see if you can sense if there is an overall feeling in body and mind.

Beginning with the feet, bring attention to sensations of the feet, top, bottom, toes, ankles. Moving up turn attention to the legs, thighs, and hips. From here sensing the torso, the back, the abdomen, the chest, the sensation of breathing. Move up to the shoulders, to the neck. Notice sensations on the face, the top of the head. Letting go take a moment to sense the breath reaching all parts at once, and acknowledge connection and awareness of the whole.

Lovingkindness For Difficult Interactions
There are times that we are challenged by different patients and leave an interaction feeling unresolved, angry or upset. Lovingkindness is a way of transforming this feeling. With that person in mind, repeat these phrases with your out breath:
May you be well,
May you be loving and be loved,
May you be peaceful and at ease,
May you be happy.

The same phrases may be directed towards oneself, or all beings (May I…or May all beings…)

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Resources:

Heart Math
http://www.heartmath.com/quick-coherence-technique

Walking Meditation
http://www.dhammatalks.net/Books2/Thich_Nhat_Hanh_A_Guide_to_Walking_Meditation.htm

Sitting Meditation
http://theidproject.org
http://www.tibethouse.us

Breathing
http://www.breath-body-mind.com/ Richard Brown

Body Scan
http://www.mindful.org/mindfulness-practice/the-body-scan-practice

Lovingkindness
https://www.youtube.com/watch?v=VV59sbZXIfw
https://www.youtube.com/watch?v=W3uLqt69VyI

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References:

Brown, R. P. & Gerbarg, P. (2012).
The healing power of the breath.
Boston, MA: Shambhala Publications, Inc.

Cohen-Katz, J., Wiley, S. D., Capuano, T., Baker, D. M., & Shapiro, S. (2004).
The effects of mindfulness-based stress reduction on nurse stress and burnout: A quantitative and qualitative study
Holistic Nursing Practice, 18(6), 302-308.

Davidson, R. J., Kabat-Zinn, J., Schumacher, J., Rosenkranz, M., Muller, D., Santorelli, S. F., … & Sheridan, J. F. (2003).
Alterations in brain and immune function produced by mindfulness meditation.
Psychosomatic Medicine, 65(4), 564-570.

Emmons, R. A., & McCullough, M. E. (2003).
Counting blessings versus burdens: an experimental investigation of gratitude and subjective well-being in daily life.
Journal of personality and social psychology, 84(2), 377.

La Torre, M. A. (2004).
Walking: an important therapeutic tool.
Perspectives in Psychiatric Care; 40/ 3; pg. 120
Compiled by Mia Borgatta, BSN, RN, LMT, RYT
http:www.mayoganyc.com

Mia Borgatta
BSN- Holistic Focus
Pacific College of Oriental Medicine

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Mia Borgatta, RN, has been a massage therapist since 1986, and has offered holistic treatments that help to restore body, mind and spirit. She has taught prenatal yoga classes since 1994, and currently she directs the Prenatal and Postpartum program at Lila Yoga, Dharma, and Wellness. Through yoga she helps women prepare for the challenges of birthing and mothering, as well as work through day-to-day discomforts. As a doula she has been present for the wonder and intensity of over 215 births and uses her skills to help each woman find her own way. Mia is a mother to spirited and inspiring Jaya, born at home in1994, who brings great joy to her life. She offers childbirth education classes and workshops, and teaches meditation, breathing and imagery in her classes. She brings to Nursing her experience with creative and holistic thinking and application.
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Kaci Hickox – Should she be subject to Quarantine?

Kaci Hickox – The nurse who treated ebola patients in West Africa – Should she be subject to Quarantine?
I feel nurses in general do things in the best interest of their patients based on their knowledge. Nurses advocate for their patients where they work, in their community. Nurses work in the trenches. I commend anyone who goes on a humanitarian effort, especially health care professionals who risk their life, often using their own funds to fly to the affected area to treat individuals they have no connection to other than they are members of the human race. It is a selfless act that should be considered in the highest regard. I have the utmost respect for what Kaci has done. What I don’t agree with is her behavior upon return to the US. This infectious disease holds many risks to all that may come in close contact with her. There is no cure and the incubation period for Ebola is uncertain. Recent research is leading to a potential need for an even longer quarantine period.

Questions that I would consider are: Is this person infectious despite testing negative? This person may not have a fever but can this person infect others if they have the virus but are not expressing the symptoms just yet? Is quarantine unreasonable? I feel quarantining individuals who have served or have come in contact with people infected with Ebola is reasonable. It is for the public’s safety. If Kaci is at risk for having contracted the disease based on her location and proximity to ill individuals in probably less than optimum working conditions, does she run the risk of transmitting said disease to other individuals and possibly patients she cares for? Would she be committing malpractice by treating patients by merely braking quarantine? In watching the news I had heard the federal government was putting pressure on the states to lift the quarantine protocols that were implemented in places such as New Jersey and New York citing that these quarantines would discourage health care workers from embarking on humanitarian efforts. Frankly, I disagree. Health care professionals go into health care understanding the risks. Sometimes we don’t think globally. Sometimes we think we are invincible. Often we forget we are mere mortals subject to the rules of the human race. Perhaps Kaci needs to be reminded of the devastation that this disease has caused and the risk of illness to the people she loves. There is so much unknown about this virus. Should she take this risk? Should our society permit her from taking this risk on our behalf by breaking quarantine?

Resources:
http://www.who.int/mediacentre/factsheets/fs103/en/
http://www.cdc.gov/vhf/ebola/exposure/index.html?s_cid=cs_284
http://en.ria.ru/society/20141027/194695787/CDC-to-Announce-New-Policy-for-Healthcare-Workers-on-Ebola.html

 

 

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Giving thanks

I am what I would call a fair weather Jew. I follow the high holy days. I say Yizkar. The remembrance prayer on the high holy days, for my family members who are no longer with us but that is the extent of my religious observance. On and around the Jewish New Year, Rosh Hashanah, I find myself reflecting on the past year and what I have to be thankful for.

I have a lot to be thankful for. I have a wonderful husband and a beautiful son. I have a book coming out. Great friends, trustworthy colleagues, knowledgeable mentors, and great work environments. I must say in some ways it has been a wonderful year.

I can choose to be sad about the loss of my father in law and that my son will not know such a wonderful man or I can be thankful that my son was born early and that my father in law had the chance to hold him and enjoy precious time with him.

Though I am saddened that my father in law was not written in the book of life. I am happy I still have my husband, my mother in law and my dad, my step mom, my adopted mom, my brother, my sister in law, my nephews, my niece as well as a wonderful extended family.

 

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Ebola

As a patient advocate and as a nurse I have to make a statement about this poor nurse in Texas who contracted Ebola.

Spreading of an infectious disease when health care professionals put on those special isolation gowns and gloves this is part of “INFECTION CONTROL”, not infection eradication. Of course the goal is to eradicate but the point is to control the spread of the infection while caring for the ill patient. Part of controlling the spread of infection is educating the people visiting about the immediate risk to themselves and others and what protective gear they should be wearing. This is not about being politically correct, this is about safety. With the shift in health care to be more “patient centered”, we have gotten away from the ultimate goal patient safety and infection control. We now have rugs in waiting rooms. Can you really clean a rug? Children are permitted on the nursing units. When I was at the hospital recently, young children were crawling all over said rugs? How can that be sanitary?

Regarding the treatment of the nurse who contracted Ebola by the media, the initial response from the media was that the nurse broke protocol…? The problem is the guidelines set forth and provided were standard infection control protocols. I am glad the local nursing union stood up and said give us specific protocols to address this infectious disease and permit us to ask questions to the experts — “Permit” being the operative word. You can write up a protocol and no matter how clear it seems, there is room for interpretation. This is why dialogue needs to occur.

The difference between Ebola and other infectious diseases that we may see in the hospital is the virulence and the risk to life. Logically, would this nurse break protocol knowing the risks? I find that highly unlikely. Nurses are at higher risk for contracting infectious diseases due to the proximity to the patient and the time spent with the patient. In the critical care setting the nurse to patient ratio is, generally one to two patients. Based strictly on these numbers, the day is spent with the patient. The longer you are in contact the higher the risk of contracting the disease. The nurse has more contact with the immediate area of the patient. The immediate area includes surfaces that may have inadvertently become contaminated Nurses are taught about infection control practices during our training. No other health care worker spends this much time in close contact with a patient with an infectious disease. The doctor examines the patient and leaves.

Nurses are also taught about the consequences of breaching policy and procedure as well as the consequences to our health as well as the health of our family and loved ones if we fail to follow proper infection control practices. Other health care workers come in contact with the patient and may touch surfaces after they have come in contact with the patient. Is it possible that someone other than the nurse did not follow proper procedure, proper hand washing, proper decontamination, absolutely?

Previous blogs of mine discuss the dirty hands of doctors, a pastoral care professional that touched my skin wearing gown and gloves…  All health care workers must be trained to effectively provide infection control. I wonder had the health care professional that contracted Ebola in Texas been a doctor would the media have treated him or her differently? When the story broke o 10/13/14 on CNN consistently reporters stated that the nurse broke protocol? Yet the following day CNN and other news networks stated quietly that the nurse states she did not break protocol and now they are saying they are unsure what occurred. The physician consultants for the news networks explain about general infection control practices and Dr. Sanjay Gupta makes a good point that the key here is that this infection is virulent and less forgiving.

All health care workers must be trained and retrained in proper infection control and the specifics of the disease they are working with. It is a shame that the first statements from the media was, “what did the nurse do wrong?”

 

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Infection control not infection distribution

Be careful when you visit the hospital.  You may be getting more than what you came for.  

1. Bacteria, the gift that keeps on giving and hospital acquired infections a gift that you can re-gift:

On two occasions in this past year family members were gifted with infections compliments of our wonderful New York hospitals.

The first family contracted this “hospital acquired” infection during a hospitalization for surgery.  The fact that they developed the infection was not surprising to me.  More surprising to me was the way the infection was handled by the health care professionals.

I was 6 months pregnant and it was obvious that I was pregnant.  No one stopped me from going in the room.  In fact I was encouraged to go in.  I was given a gown and gloves.  No education was provided.  No one said anything when my step-mother came out of the room gown and gloved and proceeded to touch my jacket and other surfaces that had items that may be used for other patients.  What happened to infection control?

Health care practitioners are afraid to educate patients and family members on proper infection control practices for fear of being verbally abused by family members and fear of family members complaining?  Complaining about reasonable requests.  We are living in a world where reimbursement is related to how patients are catered to, not necessarily cared for.  First, the news became all about the ratings now health care is following suit.  Health care is not like every other business and our health care system is suffering for it.

Our hospitals are providing infectious disease distribution – not infection control-
The second family member acquired  a virulent infectious disease called C-diff while he was in the hospital.  My husband and I were over a day prior to the hospital notifying the family of the infection and we were touching him.  We have a newborn at home and I was concerned more about our son’s health and safety.

The incubation period of C-diff is unknown.  It can last on surfaces for 7-10 days Generally C-difficile does not effect healthy people. Generally is the operative word.  I know of 3 friends/colleagues who had healthy immune systems who contracted C-diff.

I instructed my husband and all family members to wear gown and gloves when visiting our family member.  As I walked in the hospital room and went to take a gown and gloves from the supply cabinet, I was instructed by the nurse that there was no need for me to wear a gown in the room since I am a family member and an not providing personal care, these type of precautions are unnecessary.  This was reinforced by the pastoral care professional. I find that comment odd coming from the pastoral care professional.  I didn’t know that pastoral care was trained infection control and in regards to infection control.  Why was the pastoral care professional wearing gown and gloves?  Do pastoral care professionals now provide personal care? Furthermore why did she come over to comfort me and touch me with her gowned gloves.  This not only doesn’t seem right.  The whole process is completely wrong.

How does the hospital know that I am not going home to a person who doesn’t have a healthy immune system?  The incubation period is unknown and C-diff can last on surfaces for about a week.  I called the infectious disease department and expressed my distaste for the failure to educate and the misleading information that I aws provided and I expressed my concerns.  The head of the infectious disease department informed me that the CDC guidelines are not prescriptive and informed me that “everyone” who went in the room was provided information on the bacteria and how to prevent transmission.  I told her that my family member did not receive this documentation and I did not either.  My family member was provided this information later that day.

The take home message is do your own homework as you may be exposed to gifts you would much rather return.

 

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