Monika was a 78 year old female who moved to the US in her 40’s to advance her career in the finance industry. Her family consists of 3 siblings who remained in Germany with their families. Monika met & married her husband and they were happily married for nearly 30 years. It was a second marriage for George and he had adult children from his first marriage. George died of cancer in his late 70’s after a prolonged battle that included a feeding tube. Monika wanted to ensure her desires for future healthcare were followed, so her attorney referred her to Family Nurse.
Monika had completed her advanced directive with her attorney and wanted Family nurse to serve as her durable medical power of attorney and advocate should she become unable to advocate for herself. FN conducted a comprehensive exploration of Monika’s values and developed her advance healthcare plan. Monika was very clear that she had lived a very good life, and that she would not want anything artificial to prolong her life. She was especially clear that she did not want a permanent feeding tube like her late husband had. When the Lord called her, she was ready to go. Monika was very healthy, walking 3 miles daily, and she took no medications daily. The final document was sent to Monika the following week to sign, but she was not feeling well, so she did not review it right away. The following week, Monika called 911 due to feeling very poorly and having abdominal pain. She was diagnosed with colitis and sent home on antibiotics. 3 days later, Monika again called 911 because she was feeling worse. She called FN from her bed in the emergency department. Monika’s CT scan showed that the circulation to her intestines was blocked and she needed emergency surgery. Monika wanted FN to advocate for her and assist with decisions if she became unable. Because her documents were not yet signed, FN advised Monika to verbally notify the hospital that FN was her decision maker. This legally enabled FN to be her advocate, receive all medical information and make her medical decisions if she was unable. Monika underwent surgical resection of 3 feet of small intestine and the surgeons left her abdomen open because they anticipated needing to go back in to resect more. Another foot of small bowel was resected during her second surgery and they were able to close her abdomen. Monika was diagnosed with vasculitis but the doctors did not know what caused the vasculitis. Monika was on life support for 5 days, then started to recover. The major complication was an inability to safely swallow. Monika was discharged to acute rehab to build her strength and ability to swallow. Her diet was restricted to thickened liquids, puddings etc. Monika was working hard to get better, but three days after admission to the rehabilitation facility, the nurse recognized that Monika’s heart rate was very fast and irregular. Monika was taken back to the hospital. She was found to be in atrial fibrillation and during that workup, clots were found in her lungs and she had additional blockages to veins in her legs and arm. Monika was very discouraged. The speech therapist who had worked with her after surgery saw Monika a few days later and discovered that Monika’s swallow had worsened. All food and liquids were stopped and Monika received fluids in her veins (IVs). She became weaker and more depressed. Additional tests were done to try to figure out what was happening, but all tests came back negative, however Monika was getting worse. The doctors consulted with experts at Penn Medicine who suggested adding steroids, but did not feel that they would do anything differently, so they declined to take Monika in transfer. The only recommendation left was a permanent feeding tube to give Monika more time. But Monika knew she did not want that. She also knew she was dying. She told her family and wrote a good-bye letter to her sisters in Germany. Monika wanted to be comfortable and have no more tests or treatments, she was done. Family Nurse supported her family to accept Monika’s wishes. Monika was transferred to the best skilled facility in the area and received care from the best hospice provider. She was kept comfortable with all symptoms managed. Her room had a bay window with a view of the garden. Monika loved gardens. There was classical music playing softly, lighting was soft and Monika’s sister held her hand. She died 2 days later. What’s the added value? Everyone’s situation and care needs are different. Some need more information, some more support, some more advocacy. Monika’s situation was very unique in that she maintained her cognition throughout her illness. Most people lose their ability to think clearly, they may experience confusion or even lose consciousness. Monika was also very clear that she wanted Family Nurse to continue to advocate for her, even after her family had arrived from Germany. Monika, despite being critically ill recognized the value she was receiving from having her Family Nurse advocating for her every step of the way. What follows is a list of interventions Family Nurse provided for Monika and why they are important:
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Bruce & Addy are long time clients of Family Nurse. Bruce has a medical history of heart disease, diabetes, high blood pressure, irritable bowel syndrome and dementia. Addy has a medical history of Graves disease. They were driving home from the grocery store when they were hit by a speeding driver going 80mph in a 35mph zone. Their car was totaled. They were taken to the hospital where they received a comprehensive work up including CT scans, blood work, X-Rays etc. Thankfully, everything came back negative. After being in the emergency department for over 12 hours, exhausted, having eaten nothing since the accident and not having any of their regular medications – they were very anxious to go home.
Right before discharge, their vital signs were measured one last time and found Bruce’s heart rate to be too low. He had also developed diarrhea, which is his normal stress reaction. Addy, at her wits end texted Family Nurse, who suggested the ED notify Bruce’s cardiologist for instructions and advised that they had the right to leave the hospital if they wanted to, they could not be held against their will. The goal of this information was to help Addy feel a sense of control, not to encourage her to leave immediately, which she appreciated. The cardiologist agreed that it was safe to discharge, but did not provide any directions about Bruce’s medications. The discharge instructions only stated they should resume regular home medications. When they got home, Addy called Family Nurse with questions about what medications to give Bruce. He hadn’t had anything to eat and she was wondering how much insulin to give him. He was also due for the medication that slow his heart rate, as well as other medications that he was due for in the middle of the day, with dinner and at night. The emergency department did not advise what to do for tonight and it was too late to reach their physician. Family Nurse reviewed all medications, intended actions, side effects and things that are important for Addy to know to decide what to administer, and what to hold off on. Family Nurse assisted Addy to decide what was most important to do tonight, first thing in the morning and to call Bruce’s physician and cardiologist when she was able to. Family nurse provided the information, education and support to end an extremely difficult day with peace, because they had confidence armed with information they needed to make the right healthcare decisions. Do you need to have a nurse available to answer your questions 24 hours a day? Someone who knows you, someone you trust and have developed a relationship with? Call Family Nurse today! Mr. E is a 78 year old gentleman. He has been married to his high school sweetheart for over 50 years.
Mr E Retired after a long and prosperous career as an engineer for the DuPont Co. He maintained a fairly good state of health despite having a 15 year history of Parkinson’s Disease. Mrs E is also 78 years old and is in excellent health. She walks every day. They have 4 Grandchildren and have had the opportunity to take them to Disneyworld. Over the past few months, Mr Es condition has worsened making it very difficult for him to be cared for at home by his wife. He fell one evening and was rushed to the hospital and admitted. Once there, his condition deteriorated. The doctors told Mrs E that her husband was having trouble swallowing because the Parkinsons had made his throat weak. They suggested a feeding tube be placed so that he could safely be given food and fluids. While Mrs. E knew that her husband would never want to be kept alive on machines, she wasn’t sure what he would want. He had gotten so confused lately that he couldn’t even tell her what he wanted. She consented to the feeding tube and it was placed the next day. Tube feedings were started the day after the tube was placed. Mr Es stomach seemed to get bigger and he was acting like he was irritated & uncomfortable but wasn’t able to tell us what was wrong. Sometime over night, Mr E vomitted. He was unable to clear his throat and aspirated (vomit got into his lungs). He was not able to breath. The emergency team was called, Mr. E had a breathing tube placed and he was transferred to the intensive care unit. Mrs. E knew that her husband did not want to be kept alive on machines – and now he had a ventilator, medicines in an intravenous, tube feedings – so many machines. She was so scared and didn’t know what to do. Her daughter came from out of town to help. She assured her Mom that Dad was strong, and he would get through this, He is a fighter. Three weeks passed and the doctors told Mrs. E that he could no longer keep the breathing tube in his mouth, because it would damage his upper airway. They said they would have to place a tracheostomy because Mr. E needed more time to wean from the ventilator. Petrified, Mrs. E talked with her daughter who assured her there was no choice, Dad needed extra time. The tracheostomy was placed. Mr. E was no longer responding to his family. He just laid there in the bed. He wouldn’t even open his eyes when Mrs E would hold his hand and talk to him. Another two weeks went by. The doctors told Mrs E & her daughter that Mr E didn’t seem to be getting better. They asked if this is how Mr. E would want to live the end of his life. The daughter became extremely angry- how dare they talk about her father this way. She walked away and took her Mom by the hand and led her back to Mr E’s ICU room. Mrs E was distraught. Of course this isn’t what he wanted. Why was he put through all this torture – for over a month? She hasn’t had the man she loved since the day he fell. She felt so guilty that this is how he would die. She wanted to take care of him at home, have the family say their goodbyes together. Her daughter was talking about suing the doctors for mentioning ending her fathers’ life. She would not talk with them any more. Mrs E could not reason with her daughter and felt so alone. She was terrified that her daughter was going to alienate the medical team who held her beloved’s life in the balance. How did all this go so wrong??? One night, Mr E’s heart stopped. The doctors & nurses resuscitated him by doing chest compressions and starting more medicines. The doctors are testing to see if his brain is dead. It did not have to be this way. I have been a nurse for over 30 years. 20 of those years included serving on and leading hospital ethics committees. That is where I met this family, and hundreds more in similar situations. The doctors requested an ethics consult because it was clear Mr E was not going to recover from his illnesses, but the relationship between the family and the medical team had deteriorated so badly. The medical team felt that Mr E was suffering and wanted to withdraw the machines and allow Mr E to die, but the daughter would not permit that conversation. I have seen countless patients suffer from inadequately informed medical decisions. Would it surprise you to know that Mr & Mrs E had advance directives? They – like so very many of my patients had their lawyer draw up their advance directives at the same time they completed their will. The only thing Mrs E recalled was that Mr E said he did not want to be kept alive on machines. The doctors never told her Mr E was being kept alive on machines until the very end. She did not know the implications of the decisions she was making. I started Family Nurse Consulting after spending a career witnessing hundreds of people suffer from medical decisions that were not fully informed. Even when doctors & nurses spend the time to explain what is happening, families are so stressed over the situation that they are not able to process the information fully. Doctors and nurses use medical jargon that many people don’t fully understand; and when they ask if the patient or family have questions – so many times people just don’t even know what questions they should ask. These situations can be so overwhelming. Family Nurse provides three key services – First – we can help people navigate their healthcare. we help explain what is going on – weather someone has multiple doctors because of a chronic medical condition such as parkinsons or heart failure or COPD – or if a loved one is hospitalized and information and support is desired – Family Nurse can help. Family nurse can review medications, tests and procedures to ensure you fully understand the risks, implications and ramifications of every decision. Family nurse provides legally executed advance directives documents – AFTER a comprehensive discussion to ensure future decisions are fully informed. We include the people who will be making those decisions in the conversations. We have a proprietary values assessment that guides the discussion. Some people do not have someone they wish to name to make their future healthcare decisions, Family nurse can serve as your durable medical power of attorney and make those decisions for you when you are no longer able to do so. Family Nurse conducts the comprehensive values assessment to ensure that your medical decisions reflect your values. Studies show that people who have a medical professional in the family – someone who is advocating for the patient – live longer and have a better quality of life. What about everyone else? Everyone should have access to an advocate who can help navigate the challenges of healthcare – Family Nurse can be your advocate, your Nurse in the Family. John was only 59 years old. He was a veteran and had served in the Army for 20 years. John was relatively healthy but had asthma, diabetes and high blood pressure. He got sick in April and was hospitalized for an infection. He developed kidney failure. John needed to have both kidneys surgically removed. He was discharged from the hospital with a plan for dialysis three times a week, which he endured for a month but he absolutely hated the way he was feeling. He was tired all the time, had completely lost his appetite and didn’t enjoy anything anymore.
John decided he would stop dialysis but didn’t discuss his decision with his family or doctor, he just stopped. He was strong-willed and wanted to be in control, but was feeling very out of control. He went into respiratory failure after 5 days without dialysis and his wife called 9-1-1. He was again hospitalized, put back on dialysis, treated for pneumonia and fluid in his lungs. He had completely lost the desire to eat, so a feeding tube was surgically placed. John became confused and paranoid. His family didn’t understand what was happening and was completely overwhelmed and at a loss for what to do. John had lost his will to live and his family finally had to place him in a nursing home. HE WAS ONLY 59 YEARS OLD!!!! Family Nurse could have helped. If John and his family had contacted Family Nurse, the implication of the medical decisions could have been explained and John and his family could have made decisions that reflected Johns values. Instead, John spent his last days in a nursing home, because his family could not safely care for him at home. John did not get the care he wanted. Don’t wait until it is too late… Call Family Nurse today. 302-893-5595 Clinton is 56 and very healthy. He has completed one Iron Man Triathlon and was training for his second. His training routine includes strenuous workouts 6 days a week. Thursday was his long swim day and he was planning to swim 4,000 yards. He wasn’t feeling great when he awoke but attributed it to a stressful week at work. His wife, Sue, encouraged him to take the day off, but he decided in typical triathlete fashion to push through. Clinton had almost completed his workout when he felt an extreme pain in his chest and lost consciousness in the pool. The lifeguard did not immediately notice that Clinton had stopped swimming and was face down. Clinton was removed from the pool and was noted to not be breathing. 9-1-1 was called and Clinton was eventually revived. By the time Sue was notified and got to the hospital, Clinton was already in the cath lab. He underwent a procedure to remove the blockage in his heart and was transferred to intensive care. He was on life support but was not waking up. Sue was in shock. This was not supposed to happen. They are young, but they had done their advance directives. Sue found the documents and brought them to the hospital.
About a week had passed and Clinton was not waking up. He was not on sedation and was not responding to anything except deep pain. The doctors told Sue they were not sure Clinton will recover to his past level of health. Another week passed and the doctors explain to Sue that they cannot keep Clinton on the ventilator using the tube in his mouth. After 2 weeks, that tube causes damage to the trachea. They also recommended a permanent feeding tube be surgically placed in his stomach. It doesn’t seem that there are any options so Sue consented to the procedures. Another two weeks passed, and Clinton had stabilized. He remained on life support and the doctors believe he will never be able to live off the ventilator. The social worker talks with Sue about placement in a nursing home. Sue remains in shock with this whole situation. She has no one supporting her while she tries to figure out the financial implications. This is so tragic, and Sue feels so alone. Is this going to be the rest of their life? They had planned to travel and enjoy retirement, now their savings will be spent to pay for Clinton’s care. She knows he would not have wanted this existence – how did this happen? What should Sue do? This tragic story occurs all to often. Advance directives documents such as Clinton & Sue’s – don’t go far enough to assist decision makers. Decision makers need so much more support and information, but don’t know the healthcare system well enough to discern where, when or how to get what they need. There were options along the way, but without an advocate with medical expertise, they were difficult to discern. Don’t let this happen to you or your family ~ call Family Nurse 302-893-5595. Advance care planning is an unpleasant experience. It forces us to consider our own mortality. The only current benefit from developing advance directives is the security in knowing your future medical care will be what you want. Unfortunately, this is often a false sense of security. Decades of caring for patients and families that lacked adequate advance care planning is the reason Family Nurse was formed. Some of the many problems encountered when advance directives are formulated without adequate clinical knowledge include:
What if it’s too late for advance care planning? Those experiencing health crises and families struggling to understand medical information and make the best decisions for their loved one need support. Family Nurse is a patient and family advocate assisting with navigating complex healthcare, translates medical information, provides information and education on implications of options for medical care, educates on medications and assures therapies are appropriate and consistent with the patient’s values. Clarence is 74 years old and was recently hospitalized. He was discharged to a rehab facility for 6 weeks and is finally home. He and his wife Sue are thrilled to be home! Clarence is very weak and having trouble getting around the house. Sue tries to help him, but she is frail and not able to help much. This morning, Clarence fell trying to get to the bathroom. He seems to be OK, but he & Sue are worried about him falling again and what they should do. Can they get assistance in their home? Did Clarence come home too soon? Is something else going on medically that is making him so weak? Who do they call? FAMILY NURSE CAN HELP!!!
Family Nurse can assist Clarence & Sue – and families to navigate complex medical systems to ensure you get the very best care. Family nurse contacted Clarence’s physician, reviewed his medications and discovered that he had one physician order Metoprolol and the rehab physician ordered Lopressor. Clarence was taking both medications – and they are the same medication. He was overdosing decreasing his blood pressure and making him feel very weak. Duplicate medication therapy is a risk. Having Family Nurse as your advocate can prevent these issues and optimize your medical care. I don’t want to think about death!
We all know death is inevitable, yet when the conversation arises, we change the subject. Mortality is scary! What is scarier – is when illness comes, and you are not prepared. The story of Ann provides a real-life example of why you need Family Nurse. Ann was in her mid 60s. She was healthy until she developed pneumonia. She was feeling poorly and went to the doctor who sent her to the emergency department. She was admitted to the hospital and placed on antibiotics. Ann rapidly got worse and suffered a respiratory arrest. She was coded, intubated and placed in intensive care. Ann had advance directives naming her niece, Patty to be her decision maker. Patty knew she was Ann’s decision maker, but they never discussed what she would want. The only information Patty had was the advance directive that stated Ann wanted everything done. After 2 days in ICU, Ann developed renal failure and needed dialysis. Her blood pressure was dangerously low and she was placed on IV medications to keep it up. A side effect of these medications is decrease blood flow to extremities. Ann developed gangrene starting on her toes and moving up her legs. Ann was unable to eat, so a feeding tube was surgically inserted. Patty assured Ann remained full-code status and sought every aggressive treatment possible, because the advance directives indicated Ann wanted everything done. Ann had amputations of her feet and developed very severe wounds that would not heal. She was unable to be weaned off life support so a tracheostomy (opening in the neck) was performed so she could remain on the ventilator. Ann had not woken up since the respiratory arrest, but she was experiencing pain as indicated by facial grimacing, increased heart rate and decreased blood pressure during care. Pain medications further lowered her blood pressure so could not be given. Her condition continued to deteriorate. She was unable to absorb the tube feedings and developed severe diarrhea, which worsened her wounds. She had infection in her blood that was not responding to strong antibiotics, which worsened the diarrhea. The doctors told Patty that Ann was not going to recover and suggested that they change the care plan to focus on comfort, rather than cure. Patty felt obligated to continue to do everything, as indicated by Ann’s advance directive, even though there was no hope for recovery. The tube feedings continued, and Ann developed swelling everywhere and her skin was leaking fluid. Her other organs were failing, yet aggressive treatments were continued. Three months after the respiratory arrest, Ann suffered cardiac arrest and was again resuscitated. During resuscitation, her ribs were fractured, as often happens during compressions. She lived for another day and again coded, and this time, resuscitation was not successful. Patty will never know if there was a point during Ann’s treatment that she would have wanted to stop aggressive treatment and receive comfort care and adequate pain management. The nurses and doctors did not agree with continuing aggressive treatment and multiple ethics consults were called. The relationship between Patty and the doctors and nurses was very tense. If Family Nurse had completed Ann’s advance directives, Patty would have had facilitated conversations with Ann to understand exactly what her wishes would be in many scenarios. Patty would have been able to advocate with confidence and Ann would have received the care she truly wanted. It is possible that Ann did receive the care she wanted, but not likely based on the suffering she experienced. And Patty will never know if she made the right decisions. She continues to carry that grief. If Family Nurse had completed Ann’s advance directives, we could have supported Patty through these tough decisions and advocated for Ann’s wishes with the doctors and nurses. So don’t wait! Assure your medical care reflects your values. Call Family Nurse to schedule a consultation. Shirley is 79 and relatively healthy. She lives in an independent living facility in Delaware. Her only family is her daughter, Myra, who lives in Hoboken, NJ. Myra is a busy Mom with 3 kids. Myra feels so guilty that she is so far away from her Mom. Myra has forgone her own career to care for her family.
Shirley loves her friends and does not want to move, but she is getting older and is concerned that she will eventually need help. Myra generally knows her Mom’s wishes for healthcare but is unable to attend physician visits with her Mom. Shirley had her advance directives drafted several years ago, and Myra and her doctor have a copy; so Shirley believes this is addressed and no longer thinks about it. Shirley was recently diagnosed with emphysema and now sees a pulmonologist. Myra tries to keep up with her Mom’s medical information and feels guilty whenever Shirley calls and gets her medical information confused. Myra knows about the importance of self-care, but feels conflicted when her family and her Mom both need her. Myra knows the importance of good nutrition, regular exercise and self care, but she feels guilty not being more available to her Mom. Myra is overwhelmed and does not adequately care for herself. Family Nurse can help! Family nurse can attend physician appointments with Shirley to assure all specialists are working together for her best interest. Family Nurse can be the local liaison between Shirley & Myra and the medical community translating medical information and supporting the family. Family Nurse can assure that medical decisions reflect Shirley’s values. Bob retires from a long and prosperous career on June 1. He and his wife Sue are looking forward their next chapter in life – retirement. They long to travel and spend time with friends and family. Bob & Sue are relatively healthy, just a few minor ailments that won’t prevent them from having the retirement they’ve been dreaming about. Bob and Sue recognize that, while they have their best years ahead, they also want to be prepared. They met with their financial planner and lawyer. They have all their documents ready ~ but they are not fully prepared. They have never talked with each other about their desires for health care. Of course, the other will know what to do when the time comes – and no one wants to think about their health faltering. Bob & Sue owe it to each other to have those uncomfortable discussions. In my nursing career, I came across hundreds, maybe thousands of people who did not have those conversations – and when it came time to make decisions – those decisions were made with partial information, incredible guilt and substantial stress. And the outcome was often not what would have been desired. Family Nurse can help! Family nurse met with Bob & Sue, assessed their values, desires, what was most important to each of them – and discovered that Sue would not be able to remove Bob from life support – should that ever be needed. Bob honors Sue’s beliefs, and wishes, but he absolutely does not want to be kept alive on life support. Family Nurse was able to help Bob & Sue decide together what they would want in any given situation. Bob was able to relive Sue of the stress between honoring her beliefs versus Bob’s wishes. Bob made Family Nurse his durable medical power of attorney to make his medical decisions. Sue made Bob her primary decision maker with Family Nurse as back up should Bob be unable to make decisions. Now Bob & Sue are off on their retirement adventure confident that they can optimize and embrace every moment of life.
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December 2022
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