My friend Jaenia tells a poignant story about going to a doctor’s appointment not too long ago. A couple of things about Jaenia – she is a strong woman. She loves her people well and bears the burdens of others, always offering hope. What some don’t know is that all of this comes at a personal cost.
At the time of the visit, she was going through some difficult things in her personal life. Just prior to arriving, tears were streaming down her cheeks. She pulled herself together long enough to sign in, but the minute she got into the exam room and saw the doctor, she choked up again.
“What’s going on?” said her doctor. And with that, the tears began to fall again. The doctor reached for a box of Kleenex and handed it to her. Jaenia did what most of us do during these situations. She began to apologize. The provider stopped her and said “It matters. All of this matters.” And then she allowed her to cry.
“It matters. All of this matters” This is wholistic care at its best.
Sometimes we think we have to have all the right words, that if we don’t we dishonor the one who is in front of us with their tears flowing. But sometimes, all we need to do is give kleenex and wait. Our waiting is a nonverbal affirmation that the person in our midst matters, their pain is acknowledged through patient waiting and kleenex.
This is part of what it is to bear witness to stories, whether they be stories of pain or of joy. I often talk about the ingredients to active listening and bearing witness being about the head, the heart, and the body. We listen with our heads, our intellect, the brain we’ve been gifted, the knowledge we have; we listen with our hearts, the pain and joy of our own experiences moving out of self absorption and into an empathy for the one in front of us; and we listen with our physcial selves, our bodies tuned in to the story that we are now honored to hear.
Kleenex, patient waiting, bearing witness with our heads, hearts, and bodies – it all matters. It’s what makes fractured hearts heal, one person at a time.
In the last two years, the immigration debate has become louder and arguably less civil. Political platforms and decisions based on fear have dominated the conversation, but behind the conversation are approximately 23 million people. The number includes those lawfully present as well as those who are undocumented. It includes around 12 million children who are legal citizens born in the United States, but whose parents are non-citizens.
How does the current climate affect the health and daily lives of these millions of people?
Kaiser Family Foundation wanted to find out more, and so began work with a research company to interview families in 8 cities in 4 states. They also interviewed pediatricians who work closely with immigrant families in these cities.
Their findings are significant and troubling. Among those findings are these:
Fears of deportation and overall uncertainty have increased in the last year. These fears extend to those who are here lawfully.
“I feel unsettled. Even though we already have the green card, if we do not apply for citizenship, I don’t think we can be at ease.” –Korean Parent, Chicago, Illinois
“Uncomfortable and unstable; we feel that in any moment a new rule could be issued leading to expelling us and sending us back.” –Arabic-speaking Parent, Anaheim, California
“There’s no stability. [The President] could write a tweet on Twitter tomorrow and turn things upside down.” –Arabic-speaking Parent, Anaheim, California
Children are facing increased fear that their parents will be deported and/or that they will end up having to uproot their lives and go to their parent’s countries.
“My children would come home from school and say that at school they were saying that all parents would be deported…” –Portuguese-speaking Parent, Chicago, Illinois
“All the children, even if they were born here, are fearful. They fear that anytime they’ll come back from school and won’t find their parents there.” –Latino Parent, Chicago, Illinois
“In Brownsville we have about 1,700 homeless children in the schools. Many of those children are homeless because of a parent that was deported or placed in detention.” –Pediatrician, Texas
Pediatricians and participants said that bullying and discrimination at work and at school has increased in the past year.
“They get bullied…told things like, ‘now you and your family will have to leave.’….And so, even though those kids don’t actually have to worry about their immigration status, I think obviously a child, they don’t know the details of how the system works.” –Pediatrician, Pennsylvania
“I work in landscaping, and we’re working and they see you working…and they just start yelling stuff at you…” –Latino Parent, Fresno, California
Families are making changes in their daily lives and routines base on fear.
“I am also concerned because if anything happens to us on the street, if we get assaulted or something, we won’t even be able to call the police because they will see we are immigrants.” –Latino Parent, Boston, Massachusetts
“…but now around six or seven in the evening you won’t find anyone in [the neighborhood]… due to the fear we all feel about what is going to happen.” –Latino Parent, Chicago, Illinois
Increased fear in kids is resulting in behavioral issues, mental health problems, and psychosomatic symptoms.
“The kids who come in with concerns that you can kind of trace back to anxiety are usually the upper elementary age students, like the 3rd, 4th graders, to middle school students… 7th and 8th grade, who have nonspecific complaints like abnormal pain or headaches or decreased appetites… And then, in kids that are in the junior high to high school age range, it’s a little more overt: sadness, decreased appetite, not wanting to engage in usual activities, decreased in-school performance, those sorts of things.” –Pediatrician, Arkansas
Across the board, pediatricians are concerned with the long-term consequences of this environment.
“I think that we are going to have a generation of kids, who, especially in our immigrant homes, who are going to have more adverse childhood experiences than they would have. So, I think that we’re just setting up this generation of kids to have higher incidence of chronic disease, higher incidence of poor mental health, higher incidence of addiction…” –Pediatrician, California
“I think a huge worry is that children who have problems that are minor and fixable now… that, if those children go untreated, those could end up being bigger problems in the future that are going to be harder to treat and are really going to impact the child’s quality of life.” –Pediatrician, Pennsylvania
The health and well-being of immigrant and refugee communities is something I care deeply about. Yes, it is my daily work as a public health nurse, but it is more than that. It is something that is deeply embedded into who I am as a person. I have only benefitted from the many in my life who are immigrants and refugees, and it is troubling to me that there is documented fear and anxiety that is affecting the daily lives of those I care about.
What might we do to change this? What might we do to help those whose anxiety is affecting their health and the health of their families? The answer is bigger than any one of us, but some of the things that can help are these:
Know the law* and be able to point people to the law. Some of the fear is based on rumor. It is important to squash rumors and to point people to laws.
Sensitive locations. Both ICE (Immigration and customs enforcement) and CBP (Customs and Border Patrol) consider hospitals and other health care facilities to be “sensitive locations.” Both agencies have issued memoranda that say that immigration enforcement actions are to be avoided at sensitive locations, including at hospitals and other health care facilities, unless urgent circumstances exist or the officers conducting the actions have prior approval from certain officials within the enforcement agencies.
Right to remain silent. While immigration enforcement at health care facilities is limited by the “sensitive locations” guidance, immigration agents may enter a public area of a health care facility without a warrant or the facility’s consent and may question any person present, but those people have the right to remain silent.
Reassure your patients. Educate and reassure patients that their health care information is protected by federal and state laws.
An appeal to those of us who are Christians:
Caution and compassion are not incompatible; instead it is reasonable to assume that they work well together. The state is not the master of the church. If you are part of a faith community, none of this prohibits you and your faith community from reaching out to those who may be affected. They do not prohibit you from reaching out, in love, to refugees and immigrants in your midst. It is a lot easier to wear a sign and yell than it is to make a hot meal and take it to strangers, to check in with sick neighbors, to pray for those who are anxious and fearful. We must be willing to do more than react emotionally. We must be willing to put our loudly voiced news feeds into real action.
“The ability to love refugees well doesn’t require a certain party affiliation. It doesn’t require you to vote a certain way. But it does require us to show up, to step across “enemy” lines, and to choose love over fear.” from Preemptive Love
Note: Communicating Across Boundaries has never been, and never will be, a political blog, but I see this not as a political issue, but as a human health care issue. The brief is much longer and more detailed than this blog post. This post is simply to raise awareness of the issues that result from an environment of fear and anxiety.
“If you were giving a talk on teen pregnancy to a conservative, faith-based group who cares, what messages would you want to convey?“
A couple of years ago I asked this question of someone in our family planning division at work. I was serious. I wanted her perspective. She did not hesitate.
“I would tell them we live in a sex-saturated society, and everyone else is talking about sex – they need to be part of the conversation. I would tell them that you are not giving a teenager a mixed message if you tell them what you believe and what you would want them to do, and yet arm them with tools and knowledge about contraception if they make a different choice.” It was a great conversation.
So armed with this, as well as facts and figures that tell more of the story of teen pregnancy I ended up leading a discussion at our church.
Along with the facts, I wanted to give a face to the story. I chose to show a clip from a documentary called “The Gloucester 18”.
In 2008 Gloucester, Massachusetts – a seaport city known for its lobster, fishing and The Perfect Storm found itself in the center of a world-wide media frenzy. Reporters from as far away as Australia and Brazil descended on the town with cameras,microphones and all the other apparatus needed for a sensational story. The reason? There were four times the number of teen pregnancies than previous years and word had surfaced that 18 teenage girls had made a pact to become pregnant. As the nurse practitioner at Gloucester High School said “People love scandal”.
News networks preyed on this story like hawks and the girls and their families were deluged with phone calls from CNN to Dr. Phil.
So what is the real story behind these Gloucester teenagers?More importantly what’s the story behind teen pregnancy in general?
What we know:
We know several things. We know that teen pregnancy is a complicated issue and those that ignore the complexity are living in denial. “Just Don’t Do It” or teaching kids about sex by showing them Barbie and Ken in a shoe box seem to be ineffective ways to deal with teens and sex, teens and pregnancy. While the United States has seen a significant decline in recent years, the lowest rate in 70 years, we still have the highest rate in the developing world, surpassing Great Britain, France, The Netherlands and Sweden.
We know other things as well….
that 50% of teen mothers get a high school diploma by age 22, compared with 90% of teen girls who do not give birth.
that teen childbearing costs U.S.taxpayers about $9 billion each year.
that girls born to teen mothers are about 30% more likely to become teen mothers themselves.
that children of teen parents are more likely to do poorly in school and to drop out of school
that half of teen pregnancies end up in abortion – if we care about abortion we need to face and care about the issue of teen pregnancy
that southern states have a higher rate of pregnancy than northern states
that when money is put into sex education and birth control, the abortion rate goes down.
So when the discussion comes around to “Do we expect abstinence only programs to work in the world as we know it” I would say no. Any good sex education program has abstinence as a part of the curriculum, but the operative word is part not the entire curriculum.
Back to the Gloucester 18 – a face to the problem. The truth is, there was no pact. There was no conspiracy to all get pregnant at the same time. Most of the girls found out about a pact by watching the nightly news. The stories portrayed are poignant and real. In the spirit of a good documentary there is a raw and compelling truth that comes through and you can’t stay detached through facts and figures because they now have names and faces and most of all, babies. Beyond the newspaper stories were kids having kids. Girls searching for meaning and purpose, girls looking for stability and love, girls trying to please boyfriends and parents, friends and school authorities. Girls who were still trying to grow up and ended up facing the task of motherhood and parenting.
God doesn’t force his boundaries on anyone; He may long for us to stay within them, but He doesn’t force us.
As much as I may want to wave my wand and make teenagers make different choices, I don’t have that ability. But I can understand the problem, present my view passionately and at the same time be willing to recognize the world we live in, a world we must respond to in ways that are wise. We live in a broken world, a world that is not as it should be.Our world is made up of people who have choices. God doesn’t force his boundaries on anyone; He may long for us to stay within them for our own protection, but He doesn’t force us. So what should my response be? Compassion? Common sense? Tough Love? Interest? All that and perhaps more?
As I think about the issue of teen pregnancy and teen sexuality I think about sex as a china cup. A fragile, expensive china cup created by a Master Craftsman, with a unique and beautiful design. But once passed from the Craftsman to us to care for, the china cup broke into many pieces. And each of us try to put together these broken pieces, try to put back a pattern and restore a sense of what was.
Teen pregnancy is just one broken piece of the many. Can the Church be part of a solution to put it back together?
Note: This blog has been revised from a post written in 2012. I chose to repost because of the decision to cut millions of dollars from prevention programs.
Note: Seema Verma is President Trump’s nominee to lead the Centers for Medicare and Medicaid Services in the United States.
Dear Seema,
I’m a Registered Nurse who works in Boston, Massachusetts. I have witnessed first-hand what it is like for people to go without insurance, to delay preventive health screening only to find out that cancer is a far more expensive problem.
There are not a lot of things that make my proverbial blood boil, but reducing access to preventive healthcare, including maternity benefits, does. It makes me so angry I can’t see straight.
Look, I get it. Health care is expensive. Someone has to pay for it. But everyone bears the burden of an unhealthy society and while the Affordable Care Act (aka Obama Care) was not perfect, it began to put some policies in place that have been needed for a long time.
I come to this not from any political party line. I am a proudly independent voter – in fact, prouder by the day that I don’t buy into that assanine system called “two party.” I also live in Massachusetts where a Republican governor put health care reform as a top priority over 8 years ago and we are slowly reaping the benefits.
When, at your confirmation hearing, you mentioned that coverage for maternity benefits should be optional, I shook my head in disbelief.
Optional? Optional? I had to repeat it to myself to believe that you actually said it. The argument goes that if you’re a man or too old to get pregnant, then why should you have to pay for someone to have a baby? The lack of logic and understanding in that idea astounds me! The logical conclusion is that I shouldn’t have to pay for any of the choices that others make. So, by your logic, I shouldn’t have to pay for the business man who has a heart attack and needs bypass surgery. After all, I wasn’t the one who ate and drank too much. It was him.
Maternity benefits are an essential part of a healthy society. Maternity benefits speak to the value of family and children, they provide essential care for a future generation.
As Linda Blumberg, a senior fellow at the Health Policy Center at the Urban Institute. Women says: “We buy insurance for uncertainty and to spread the costs of care across a broad population so that when something comes up, that person has adequate coverage to meet their needs,” But insurance is not designed to be an “a la carte approach”. “Women don’t need prostate cancer screening, but they pay for the coverage anyway.”
When as a nation did we allow politics to co-opt our health, to feed us misinformation about insurance and that terror-producing term ‘socialized medicine’? Truth is the term ‘socialized medicine’ is a made up phrase. It was first heard in the early 1900’s but came into wide use when the American Medical Association fought against a national health insurance plan proposed by President Truman. It conjured images of a hammer and sickle approach to health care that would lead us down the slippery slope to communism. That was in 1947 – and it was a public relations coup, for in the six and a half decades since that time we have allowed the term to rule us, to be thrown around willy nilly to produce fear and anger, obnoxious and ignorant voices leading the way.
Here’s what happens when you let politics coopt prevention:
A breast cancer lump ulcerates and eats away the flesh of a breast; a cervical lesion, easily removed, grows and turns into a completely preventable cancer; a gnawing indigestion and bloated feeling turns into cancer eating away at your colon – fully preventable had screening taken place early in the disease process. You know what else happens when politics coopts prevention? Abortion rates, already far too high, go up. You can’t have it both ways – you can’t want abortion rates to go down and yet reject the notion of maternity care and birth control coverage.
Preventive health is not about being Republican or Democrat or Independent or Green Party or Libertarian. Preventive health is about the health of a society as a whole; it is about being human, living in a broken world where illness and death and “pre-existing” conditions are a reality. Preventive health and being sick is not about politics. When will we in the United States get that?
What you should want to do in your tenure is make the Affordable Care Act better! You should want to expand on it and leave a legacy that puts Obama Care into the water. You should want to make a name for yourself as a person who makes health care great, not just tolerable.
Instead, I’m shaking my head and saying: “What in the name of Sam Hill is she thinking?”
C’mon Seema! Be a Woman. Stand up for what is right.
I don’t often talk about what I do – like my paycheck job, the job that pays for food, rent, and children’s college tuition. But today, because it is my biggest and busiest day of the year, I want to talk about what I do. Because I have found my niche — as a nurse in public health working with patient navigators and community health workers.
I have always loved that I am a nurse. I have always worn the title RN or Registered Nurse with deep pride. First because I couldn’t believe I actually made it through school;second because I love the profession. It challenges my weaknesses and gives voice to my strengths.
But though I have always loved being a nurse, I’ve not always been a good nurse. There was the fear factor that I would do something wrong in my early days, there was an insecurity in my skill set, a sense that I still didn’t really know where I fit as a nurse.
While living overseas in Pakistan and Egypt I worked sporadically – private duty cases, teaching childbirth education, and accompanying women during labor and childbirth.
When we moved to the United States I began working as a visiting nurse, going into homes and caring for patients who had just been released from the hospital. I was restless. I knew that clinical nursing was only half the picture of what I wanted to be doing.
It was during that time I made a job change and discovered public health. Public health allowed me to use my clinical skills as well as my creativity in developing programs and presentations to use in communities. I learned more about the big picture of health and why it matters. It allowed me to focus on underserved communities, communities that don’t have as many resources like immigrant and refugee communities, like poor minority communities. I began to understand more about working with people who have the greatest need and where, with the least amount of money, you can make the biggest impact. I ended up specifically working in preventative health screening – breast, cervical, colorectal, and prostate screening. Connecting patients to doctors and clinics so that instead of waiting until a cancer lump grew and the cancer spread, the patient would be screened early; so that instead of coping with chemotherapy and drastic life changes, they would have a minor procedure.
I found my niche in a space where I began educating community health workers and patient navigators, helping them see their natural abilities as valuable and adding clinical knowledge and other skills so they could work in their own communities and effect change. These men and women were bilingual and multicultural, but often without opportunities for higher education they struggled to find a place where those skills mattered. They are from all over the world and had made their way by various paths to the United States. They hail from Spain and Brazil, Portugal and Dominican Republic; Puerto Rico and China; Bangladesh and Somalia; the Sudan and Haiti. And they are finding their own niche in a country that is far different from the countries and places where most of them grew up.
So today we hold a conference that allows these patient navigators and community health workers to come together and learn, to come together and present what they are doing, to come together and be celebrated, to realize that they are a valuable part of our health care system.
But back to the niche – an amazing thing has happened through this process. I realize that the skills of communicating and negotiating across cultures are used regularly in this job. Those skills I felt would lie dormant and not be used again now allow me to build relationships and connections, encourage and voice understanding of the experiences of both patients and community health workers. Because all of us are outsiders that have gone through the process of adjusting to an unfamiliar world, working to carve out a niche where we can use who we are to make a small difference in the lives of some of the most vulnerable in our communities.
If you are interested in hearing from some of the people I work with about the amazing work they do take a look at this video that we are showing today at the conference. It’s about 8 minutes long and includes both animation and stories from the community health workers. It was created by my son, Micah.
Hospitals in the developing world are unforgettable – the overwhelming need, the overpowering smells, and the helplessness that one feels are etched in the memory. But they are also unforgettable because often in the midst of all that seems unholy – there are redemptive, holy moments.
Today’s post takes us to a busy, crowded hospital in Swaziland through a guest poster, Lesley Keyter – known by many as The Travel Lady. There will be more on Lesley at the end – for now read on!
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As I walk into the hospital I instinctively stop breathing through my nose.
I can’t describe the smell – a mixture of urine, body odour, stale bandages, dust and floor polish. Probably fairly typical of a small under-financed hospital in a poor African country.
In 1986 at only 18 years old King Mswati III was crowned King of Swaziland. At that time he was the youngest king in the world and one of the last absolute monarchs. With a population of a million people this small landlocked Kingdom, sandwiched between South Africa and Mozambique, relied heavily on foreign aid and volunteer organisations.
A corrupt government plus a teenage king with a taste for luxury meant that the country’s most needy were left to fend for themselves.
The hospital corridors are crowded with patients, lying on the floor, sitting in the sun, eating mealies (corn cob). Most of them show signs of horrible wounds with dirty bandages and open sores. Most are laughing and joking – it’s an African thing that even in the middle of the worst situation there is always time for a laugh. The occasional patient lies there silently suffering and in one corner an old woman looks like she is not breathing at all. Her skin is a dusty gray and her wasted legs are covered by a tartan blanket. I have learnt that it is best to keep breathing through my mouth and keep my eyes ahead.
I reach the children’s ward and pass one small ward after another until I get Ward 8. Our small group of children are abandoned but the Swazi Government refuses to believe there is such a thing as an abandoned child. It is contrary to tribal custom. So the children end up here in the hospital, in Ward 8 as long term residents. Our volunteer efforts provide nannies, toys, food and even school fees and school uniforms.
“Aish Medem – I am glad you are here” – Julia greets me as I come in. “I need help with Mandla – he won’t eat his phutu(porridge) and I am busy with the baby”.
Mandla is a hefty 4-year-old with Down Syndrome. He’s quite strong and a handful at times. I get to work, distracting him with my car keys while I shovel the porridge into him while I have the chance. Julia is working with the new baby – just 3 months old already diagnosed with TB and (we are sure but nobody says the word) probably dying from AIDS.
No sooner am I finished with Mandla – a huge clean up involving his face, hands, chair, floor and toys – than Precious needs a diaper change. She is 3 years old and this is the only home she has known. She is still not talking properly. Julia is walking around with the baby (as yet unnamed) with a deep frown making the characteristic clicking noises of disapproval with her tongue.
“What is it Julia?” I ask from the depths of the diaper bucket.
“Hey Medem, I do not know what to do about thees baby. She is very very sick but the doctor he says he is too busy and this one is going to die anyway so he cannot spare the time”. Julia’s eyes fill with tears and I can see that the doctor is right. The baby is so thin – overwhelmed by the diaper. Her breathing is shallow.
“Well maybe we can speak to the Red Cross or Save the Children,” I suggest. Surely there must be someone who can get some help to this baby – give her a fighting chance.
“Well Medem – it is in God’s hands”
Indeed, I think to myself. I’ll see who I can phone when I get home.
I feel a sharp tug at my skirt and look down distractedly. There is Mandla – his characteristic Down Syndrome eyes gleaming with delight. In his hand he has my lipstick and has managed to paint it all over his face. He looks up at me with a big smile – a glimmer of hope in the Children’s Ward.
About Lesley –
As a Navy brat Lesley is no stranger to travel. She was born in England and in her teens emigrated to South Africa. From there it was just a short hop to the tiny African Kingdom of Swaziland where she lived for 17 years. She now calls Calgary Canada her home and has turned her love of travel to a thriving business known as The Travel Lady.
In 2008 HSBC Bank unrolled a brilliant advertising campaign. Called “Different Values”, the campaign showed three pictures side by side.
Sometimes it was three identical pictures with a different word across each picture:
Other times it was three different pictures with the same word across each picture:
The point of their campaign was that we all have different values. The head of marketing at the time, Tracy Britton, said “HSBC’s global footprint gives us the insight and the opportunity not only to be comfortable, but confident in helping people with different values achieve what’s really important to them.” Ideally people would choose HSBC to achieve “what was really important to them”.
Prescribing different meanings to words or having different concepts of the same item is a huge piece of miscommunication. If I think of a Persian carpet as decor, and my Muslim friend sees it as a sacred space for prayer, then there is possibility for offense when she sees it in my front hallway, subject to all the traffic – shoes, dirt, clutter – that comes with a busy household.
A couple of years ago I heard a story that perfectly illustrates this confusion in communication.
A nurse who is a diabetic educator was working with a woman from Brazil who had diabetes. We’ll call her Fernanda. Fernanda was doing well at understanding the need for recording blood sugars during the day, taking insulin based on those blood sugars, and keeping a food journal. At regularly scheduled times she would come to the diabetic educator for review of her journals and further diabetic teaching. Those appointments generally took place early morning.
One day the appointment was a bit later. When Fernanda got to the office the nurse chatted with her, and, as was customary, did a finger stick to check her blood sugar. At a number of 300, the blood sugar was off the charts high. They both looked at each other in alarm. Fernanda’s blood sugars had been consistently in the high 100’s or low 200’s. This was clearly a change.
The nurse began to question her — Did you do anything differently? What did you eat last night? Did you eat anything this morning?
Yes she had eaten something this morning but it was only a piece of bread.
Did the bread have anything on it? Was there honey on it? Sweet jam? Was it just one piece? The questions tumbled over each other. She was determined to get to the root of this extraordinarily high blood sugar.
Yes – there was something shiny on the bread and the bread was thick.
Did you eat it at home?
No – she had bought it at the cafeteria in the hospital.
The nurse’s eyes lit up. “Let’s go to the cafeteria and you can show me what you ate!” she said.
So they went on a field trip. All the breads were lined up on the far right side of the cafeteria. They walked over to the breads and stood before them. In true American style of ‘plenty’ there was a vast array of breads before them.
Had she eaten the white or wheat breads? No. Next in line were the English muffins, both whole wheat and white. No, not those either. Sweet breads? No.
And then they got to the thick, sweet, gooey, yummy, cinnamon rolls.
“That’s it! That’s what I ate! That’s the bread I had!” The nurse began to laugh and shake her head. It made complete sense that a 4 inch diameter, thick, sugar-filled cinnamon roll would send the woman’s blood sugar soaring.
When is a piece of bread not a piece of bread?
I love this story for many reasons but here are a couple of them: First – as a nurse it’s a reminder to me to dig deeper, especially when working with someone from a culture that is different from mine. Second – it’s a great lesson on cross-cultural communication. I might see cinnamon rolls – but you see bread.
What are your stories of miscommunication around words and phrases? I would love to hear them through the comments!
Related articles – In the spirit of the article I thought I’d post a recipe!
In an appropriate follow-up to yesterday’s post, Jan Klingberg takes us into the realities of hospice care. Hospice care is often misunderstood and I’m grateful to Jan for giving us first hand information about this important service.
Kristine’s husband, Gerry, returned home from the hospital with end-stage cancer after his doctor bluntly told him to get his affairs in order. The family panicked. How would they manage? Especially with twin preschoolers at home.
During many years as a communications and fundraising professional for a hospice program in Illinois, I have seen firsthand the challenges of life-threatening illness—for the patient and family alike. When treatment becomes futile at best, hope for a cure disappears and hopelessness can set in.
But what if instead of being hooked up to machines in the hospital or going it alone at home, your loved one could be cared for in a program that would reawaken hope—a hope for comfort, peace and dignity …
Encircle you and your loved one with care and support tailored to your needs,
Arrange for the delivery of a hospital bed, supplies and medication,
Visit your loved one regularly to provide medical care and other treatment to ease pain and discomfort,
Be at the other end of the phone 24 hours a day, and
Support you when your loved one is dying and for months afterward.
Our hospice program became Kristine and Gerry’s lifeline that made their last weeks together bearable. A team of professionals and volunteers surrounded the family with a multitude of services and strong support. Medical care addressed Gerry’s pain; counselors helped Kristine journey through her despair over losing her husband; social workers helped the extended family work through some tough issues; volunteers ran errands and shared babysitting shifts; experts in children’s grief worked with the twins and coached Kristine. And even when Gerry’s pain soared out of control at home, he was able to spend a few nights at our specialized hospice inpatient unit where 24-hour nursing care helped stabilize him.
Were the family’s last weeks together easy? Of course not. But they were transformed into a manageable journey that allowed Gerry to die comfortably at home, his wife and kids at his side. He was reassured to know that after his death, Kristine and the twins would be carried through their grief rather than being left alone with their terrible loss.
In the years prior to my retirement last fall, I became aware of many stories similar to Kristine and Gerry’s. The overwhelming emotion of family members after the death of their loved one was gratitude—for providing support and restoring hope. And I don’t believe I ever heard anyone say, “We called hospice too soon.” If anything, many were disappointed that they had waited too long before engaging a care system that could surround them and their loved one with what they needed to live life to the fullest in the time that remained.
Hospice has been a lifeline to thousands of people around the world for decades. The modern hospice concept actually got its start in the late 1960s in England where specialized care for the dying showed dramatic improvement in symptom control. This new unique blend of medical, emotional, spiritual and psychosocial care—palliative care—comprehensively treats the person rather than solely the medical condition.
Then amid the phenomenal medical advances of the 1970s, dedicated healthcare professionals and community volunteers in the U.S. saw the need stateside for an interdisciplinary and compassionate approach to end-of-life care. From the first U.S. hospice program in 1974 to the current 5,000+ programs nationwide, hospice professionals have relieved pain and suffering day after day, year after year. My own family—mom, dad, aunt—were cared for by hospice programs in other states. Though they operate slightly differently from the one I worked for, they have the same core belief that drives the care they provide—everyone has the right to live with dignity until the last moment.
A long-time friend—a control freak who lived alone and had every loose end tied up—said when she became one of our patients and entrusted her care to my colleagues, “It is such a relief knowing that I don’t have to manage alone anymore. These people know what they are doing … they’re the pros.”
When a loved one has a life-threatening illness and the prognosis becomes months and not years … when the goal for care becomes comfort and symptom management … why not choose the hospice experts who promote quality of life until the very end of life?
The NHPCO service, Caring Connections, offers resources for advance care planning, caregiving and living with a serious illness.
A high percentage of hospice programs are certified by Medicare. This means that they have core services provided by a hospice team (physicians, nurses, nurse’s aides, social workers, grief counselors, chaplains and volunteers) and can receive reimbursement for the care of a patient who has Medicare Part A. Many private insurance companies and state Medicaid programs have modeled their payment systems after the Medicare Hospice Benefit, so the costs of care are covered for most patients who are eligible for hospice.
Marilyn R. Gardner 