{"id":4827,"date":"2016-04-13T00:00:00","date_gmt":"2016-04-13T06:00:00","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/2016\/04\/13\/patients-caregivers-give-providers-glimpses-of-their-worlds\/"},"modified":"2021-07-09T11:55:51","modified_gmt":"2021-07-09T17:55:51","slug":"patients-caregivers-give-providers-glimpses-of-their-worlds","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/patients-caregivers-give-providers-glimpses-of-their-worlds\/","title":{"rendered":"Patients, caregivers give providers glimpses of their worlds"},"content":{"rendered":"
<\/div>

It seemed an unremarkable question to put to a roomful of clinical providers \u2013 at least on the surface.<\/p>\n

Allen Wentworth, long-time director of Respiratory Care at University of Colorado Hospital and co-chair of the Patient and Family Advisory Council, said hospital leaders had for years explored various ways to better meet the needs of patients and improve their experience during times of stress and uncertainty.<\/p>\n

\"Patrick
Patrick Kneeland, MD, moderated a panel discussion featuring two patients and a caregiver.<\/figcaption><\/figure>\n

\u201cWe said, \u2018Why don\u2019t we ask a patient?\u2019\u201d Wentworth recalled.<\/p>\n

The Patient and Family Centered Care program (PFCC) grew from that simple but profound insight, and the patient who spearheaded the effort a decade ago, Carl Miller, was also among those on hand to speak to an April 4 \u201cGrand Rounds\u201d in the Anschutz Inpatient Pavilion. Miller, who received a heart transplant at UCH 15 years ago, is now director of the PFCC and has had a hand in a host of changes and improvements led by the group.<\/p>\n

These include unit-based councils focused on delivering patient and family centered care; the hospital\u2019s no-smoking policy; a new waiting room for the Cardiothoracic ICU; a policy allowing families to be present during Medical Emergency Team calls; and much more.<\/p>\n

The Grand Rounds featured a three-person panel \u2013 two patients and one caregiver \u2013 who are involved with the PFCC. They each spoke candidly of their experiences at UCH. It is important that their voices be heard, said Patrick Kneeland, MD, who moderated the discussion.<\/p>\n

\u201cThis is a path that all of us will be on at some point or another in our lives,\u201d Kneeland said. He then invited the panelists to relate times \u201cthey felt a high level of care\u201d while in the hospital and to describe the behaviors and actions that have stuck with them.<\/p>\n

Surviving tough times<\/strong><\/h3>\n

All three have had arduous experiences. Bella Wong suffered from interstitial lung disease, pulmonary hypertension and pulmonary embolisms, among other ailments, and underwent a double lung transplant. Ben Martin\u2019s rare form of heart disease necessitated a transplant nearly a decade ago. Kim Botts helped her father and other family members through Parkinson\u2019s disease, meningitis, and other conditions.<\/p>\n

\"Kim
From far left, Kim Botts, a longtime caregiver; Ben Martin, a heart transplant patient; and Bella Wong, a patient with a variety of respiratory problems that led to a double lung transplant, share their experiences at UCH.<\/figcaption><\/figure>\n

Each was grateful for the care delivered by providers at UCH, but none singled out a special treatment, medical device or piece of technology as reasons. Instead, they spoke of everyday acts of kindness and attention to detail that made their time easier in what Martin called \u201ca strange, anxiety-provoking place.\u201d<\/p>\n

Wong, a patient at UCH since 2009, said she had inpatient stays that stretched to five-and-a-half months. In 2012, well before her lung transplant, her pulmonary hypertension and interstitial lung disease led to incipient right-side heart failure. She needed complex intensive care from highly skilled clinicians, but she remembers most pulmonary and critical care specialist Todd Bull, MD, stopping in to see her every day. It wasn\u2019t Bull\u2019s medical care that sticks in her memory.<\/p>\n

\u201cHe made me feel like a person,\u201d Wong said. \u201cI didn\u2019t feel that I was just another medical chart.\u201d<\/p>\n

After her transplant a year and a half ago, Wong went through inhaled ribavirin treatments to prevent lower respiratory tract infections that are a post-lung transplant danger. The two-hour therapy is administered three times a day at four-hour intervals for five days. The last ribavirin dose is a double treatment that takes four hours.<\/p>\n

\u201cIt\u2019s not a procedure that anyone looks forward to,\u201d Wong said, noting that the process turns the liquid medication to a powder that \u201cgets everywhere,\u201d and that no one is allowed in the room during it except gowned medical staff. The thoroughly unpleasant experience was bearable because of the care provided by UCH respiratory therapist Louis Giguere, RT, Wong said.<\/p>\n

\u201cHe always came in with a genuine smile and greeting,\u201d she said, adding that Giguere took care to explain the treatment and what to expect. Giguere confirmed the time of the next treatment with Wong, carefully cleaned the room, and generally displayed a \u201cfantabulous attitude,\u201d she said.<\/p>\n

Calming influences<\/strong><\/h3>\n

Martin recalled the deep sense of worry he felt before the diagnosis that led to his transplant. He\u2019d been told his fatigue and shortness of breath were to be expected as he aged, but his mind and body told him otherwise. He communicated his concerns to UCH cardiac nurse practitioner Cathy Kenny, MS, NP, RN, who not only listened but acted. Kenny urged Martin to get to the hospital as quickly as possible. When he arrived about an hour later, she had set up all the necessary diagnostic appointments \u2013 tests that eventually revealed Martin\u2019s heart disease.<\/p>\n

\u201cShe told me that [the hospital] would get down to the bottom of what was wrong with me,\u201d Martin said. \u201cThat makes a huge difference to someone who is scared.\u201d<\/p>\n

Throughout many days at the hospital before and after his transplant, Martin added, providers consistently offered \u201ccare, consideration, and communication,\u201d both to him and his family members, most importantly his wife. He recalled spending a two-week stint in intensive care, relying on his family to help him get the information he would need to recover.<\/p>\n

\u201cNurses and physicians spoke with them and explained what was going on,\u201d Martin said.<\/p>\n

Acts of kindness<\/strong><\/h3>\n
\"Bella
Bella Wong describes care she received at UCH that helped her through difficult medical challenges.<\/figcaption><\/figure>\n

Botts remembers gestures from providers she referred to as \u201cterms of endearment\u201d: a gentle tap on her father\u2019s hand and friendly words that helped to pick up his spirits. After her father suffered a fall, a nurse expressed concern to Botts about how her mother was holding up under the stress. It was an important reminder that the emotional toll of injury and illness extends not only to the patient but also to the caregivers.<\/p>\n

\u201cI wanted to give her a giant bear hug for that,\u201d Botts said. Later in the discussion, she noted her appreciation for the providers who helped her to understand difficult medical conditions and provided an \u201cemotional rock\u201d and \u201cnotes that resonated.\u201d<\/p>\n

In many cases, Botts added, providers can ease worried minds with efficiency. She appreciated the white boards in hospital rooms that include plans for the day \u2013 but especially when tests or scans listed \u201chappened when they said they would.\u201d Similarly, Wong said a quick \u201cI didn\u2019t forget about you\u201d from a nurse or other provider during busy times goes a long way toward calming anxiety.<\/p>\n

Providers make a hugely positive impression with patients and family members simply by showing them the name and face on their ID badge, Martin added, because \u201cit starts a conversation\u201d and forms a human connection.<\/p>\n

Unspoken messages<\/strong><\/h3>\n
\"Ben
Ben Martin listens as Kim Botts discusses the seemingly small things providers have done to help her as a caregiver for her father and other family members.<\/figcaption><\/figure>\n

Asked by an audience member to identify things the hospital could improve, the panelists again focused on points that might easily be overlooked but made a powerful impression. Wong, for example, described being awoken from sleep \u2013 a commodity hard to come by in the ICU \u2013 by the touch of a cold stethoscope.<\/p>\n

\u201cIt\u2019s a teaching hospital and I know people are eager to get a start on the day,\u201d Wong said. \u201cBut not all of us are up for that.\u201d<\/p>\n

Botts reminded the audience that patients and family members rely on their providers and are sensitive to the unspoken messages they convey.<\/p>\n

\u201cI could tell when someone was overworked and tired or when there were things going on,\u201d Botts said. \u201cPeople sometimes wear their emotions and it\u2019s felt [by us]. We can read the cues.\u201d<\/p>\n

She paused, then offered words that summed up the importance of everyone at the hospital staying in tune with the experiences of patients and family members.<\/p>\n

\u201cAnyone and everyone can make a difference,\u201d Botts said. \u201cYou never know where a connection is going to come from.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

It seemed an unremarkable question to put to a roomful of clinical providers \u2013 at least on the surface. Allen Wentworth, long-time director of Respiratory Care at University of Colorado Hospital and co-chair of the Patient and Family Advisory Council, said hospital leaders had for years explored various ways to better meet the needs of […]<\/p>\n","protected":false},"author":2143,"featured_media":2503,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[8],"tags":[1581,333],"class_list":["post-4827","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","tag-patient-and-family-advisory-council","tag-providers"],"acf":[],"yoast_head":"\nPatients, caregivers give providers glimpses of their worlds - UCHealth Today<\/title>\n<meta name=\"description\" content=\"It seemed an unremarkable question to put to a roomful of clinical providers \u2013 at least on the surface. 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