5 Steps Toward Quality of Life With Ongoing Chronic Health Problems


I had a recent conversation with several families who are in the throws of caring for aging loved ones. These families admirably discussed the issues involved in providing loving care for their parents. Here is one family’s struggle, poignantly stated:

“My sister and I are trying our best to help our mom deal with her multiple, serious health issues . It seems every time we take her to see one of her multitude of  specialists, we leave with more questions than answers. There doesn’t seem to be one place to get an answer; we are confused and don’t know where to turn”.


Living life with chronic health issues isn’t easy. According to this study on family caregivers, millions of family and friends are helping older adults with chronic disease manage medications and navigate the health system. Most are ill-prepared to take on the role; they are sons and daughters, not caregivers. Who else is there to advocate, ask questions and help parents navigate a very complex health care system? Either self-appointed or asked because your mom needs an advocate, there is some work involved. Here are some suggestions and approaches to helping her through the health care crossroads with complex health issues:

First, talk to your family. Have a family meeting. Sit down with your mom. What does your parent want; what is her goal?

Next, talk with a trusted healthcare professional. Engage in the conversation with a list of questions about the health care of your loved one. Where is she along the trajectory of life? What are her anticipated future health care needs? Equally important is capturing the essence of receiving individualized care, with quality and respect to dignity, if those are important elements to you.

In his book Being Mortal, Atul Gawande writes about the culture of providing health care and medicine to older adults in the United States. He says “Medicine has been slow to confront the very ­changes that it has been responsible for — or to apply the knowledge we have about how to make old age better.”

Being Mortal makes the case for a change in the philosophy of health care. Gawande writes that members of the medical profession, himself included, have been wrong about what their job is. Rather than ensuring health and survival, it is “to enable well-being.” The New York Times

The ultimate take-away from this book is the importance of recognizing when to ask questions, and then act when it comes to the inevitable that we all must face. To die a good death means finding in life, the courage to have caring and frequent conversations with family members and health care providers.

Pay attention to what your mom is telling you.

  • If she starts to talk about her life, she may be preparing herself and you to further express her needs and desires.
  • If she says she is frustrated by the quality of her day, or complains that it is a struggle to get through each day, she may not be happy about the quality of it and the direction it is heading.

Discuss quality of life issues with a specialist.

As this article in the Huffington Post so eloquently details, a neutral person, often a palliative care professional, can help families engage in conversation that will help all family members tackle the tough subject of care coordination, symptom management and quality of life issues. It’s at this juncture where multiple specialists collide, that their recommendations may interfere with how a person with later stages of chronic disease may want to spend their remaining days. A palliative care specialist is a good neutral resource to see through the varying opinions.

With a palliative care specialist’s help,  you will go through a series of questions together to help guide decision-making. One such tool, called “The POLST” (which stands for Physician Orders for Life-Sustaining Treatment), is designed to ensure that seriously ill or frail patients can choose the treatments they do or don’t want and that wishes are documented and honored. The POLST asks how much care a person would want in a variety of situations.  Supportive conversations led by a trusted healthcare professional may help families to interpret the questions to find answers about care decisions.

If Mom is hospitalized, be present to advocate for the wishes she made.

It’s not the time to call to see how she’s doing. You need to be there, helping to figure out what is best for her. The people caring for your mom care about her, but its their job to save lives. A nurse eloquently describes what can alternatively happen in this New York Times opinion piece, “The ICU Is Not A Pause Button“:

When I first realized that in intensive care we held lives in limbo more often than we saved lives, I asked a friend who was a more experienced nurse how she felt about that. She said that sometimes a stay in the I.C.U. lets a patient’s family prepare for his death. But while it may soften the shock of death for the family, being in the I.C.U. is unpleasant and bizarre for the patient.

Ultimately, your mom needs you to be present in the hospital to monitor the care and communicate the wishes that she has provided the answers to.

Thinking about having a difficult conversation in anticipation of loss is not easy. Anticipating the last months, weeks, days together with a loved one’s life doesn’t invoke enthusiasm. However, if your mom has an opportunity to gather those around her that love her and has happy, meaningful, quality experiences during the time that is left AND has a supportive network of providers to see that she is comfortable, the hard conversations are worthwhile.


Fulfilling Health Calls Mission One Relationship At A Time


Health Calls received an unsolicited testimonial from a family this past week. It makes us so proud and speaks to Health Calls Mission.

‘Health Calls is a wonderful service! All of the nurses are of the highest quality and you really establish a relationship with them.


Health Calls is always available and ready to help no matter the time! I’d never use another agency with my mom’s care!


Congrats (to) everyone… associated with this fine organization!’

As invited guests in people’s homes, we must negotiate care. We cannot simply “do”. This is a shift in the perspective  that often accompanies health care provided in a hospital or other clinical settings. In those settings, the structure and processes require patients to adapt to the organization.

In home health, we are the guests.  The ‘house rules’ could get in the way. Instead, Health Calls staff is focused on teamwork, alongside other community professionals to treat patients where they live. This requires actively listening to the patient and family: finding out what is important, what can be negotiated, and then aid and inspire patients to become informed about their conditions and take an active role in their treatment.

The balance of power shifts away from the healthcare team to the individual and their family in a healthy partnership. We support the patient and family while they build skills, and foster their confidence to continue to lead active and fulfilling lives, long after our work
is done.

We are thankful to be invited!

Social Work: A Model For Calm in Often Stormy Conditions

I recently asked Lillian Chinicci, MSW LSW what piece of advice about life she would offer to others.

It is never too late to achieve your goals.   I was 53 when I lost my husband.  My children were married and out on their own.  I decided to go back to school.  I earned my bachelor’s degree in Social Work and then continued on to earn a Masters degree  in Social Work.  My license to practice Social Work in Pennsylvania is very important to me, ” Lillian said.

Lillian has been Health Calls Clinical Social Worker for 5 1/2 years and says she loves her job helping Health Calls patients.  “It feels good to make a positive difference in the lives of patients and their families, when I can. ” Lillian realizes that not everyone is ready for the weighty decisions that her work forces people to face about living situations, getting additional help at home or making potentially life-altering changes. Lillian is a patient and wise clinician who knows that the impact of her visits may not be measured immediately; many that she advises will hold off enacting on her counsel to some point in the future.

One of the many agencies that Lillian refers families to is Berks Encore. Lillian says one of many services is the legal services available at Berks Encore. Legal Aid is very helpful for families who cannot afford an attorney but have legal needs. There are qualifying financial guidelines for the pro bono services to prepare simple wills and power of attorney documents, but the staff at Berks Encore are very helpful in determining qualifications. Lillian also recommends the volunteer grocery shopping services that Redner’s Market and Berks Encore have partnered to provide to those in need of the service throughout the Berks County community.

Lillian is a role model with a giving heart and service to others. She volunteers for a local hospice agency, offering friendly visits to patients at the end of life, so they are not alone. Lillian is also a role model at Health Calls Home Health Agency. She deals with difficult family dynamics with grace and a serene calm. She is gifted at helping patients and their families identify needs and focuses on what is best for the well-being of the patient. Lillian keeps conversations positive and finds common ground to help families find agreement in stressful situations and makes referrals to the appropriate community service to help them.

Lillian lives with her 7 year old Persian cat, Enzo.  She has a son, Robert, who just retired from the Navy, after 20 years of service.  He served on Submarines.  Her step-daughter is a Veterinary Technician.  She  has 7 grandchildren, ranging from ages 15 months to 23 years old. Lillian’s  mother is 91 years old and lives alone in her own home, in Lancaster County.  Lillian also assists her weekly with grocery shopping, picking up prescriptions, and doctor’s appointment.  

Lillian recently overcame a fear that she is proud of. She always had a fear of driving long distances to unfamiliar places since she gets lost easily. She has overcome that fear and has traveled to Virginia and Connecticut to visit her son and his family in recent years.


Like many people, I have been an advocate for family members who have been ill. Several years ago my Dad was in the hospital and wasn’t capable of coming right home after fracturing his hip. He wasn’t able to get out of bed or walk without help because of pain, weakness, and confusion.

The health care system is moving very fast, and insurance companies look for ways to decrease health care costs. Like it or not, people are forced to move to lower cost settings in one or two days. It’s rapid fire and you’re left with confusion. In my dad’s situation, the case manager told me Dad was accepted at a rehab, however she didn’t prep me or even ask me which rehab we would choose. Instead, she told me where she was sending him.

Where was choice?

Do you have a choice?

Yes, you do!

Choice is derived from the Patient Bill of Rights. Every patient is given this notice when receiving services in an inpatient setting. It is often housed in a folder or pamphlet provided by the healthcare organization.

The Patient Bill of Rights was adopted by the U.S. Advisory Commission on Consumer Protection and Quality in the Health Care Industry in 1998. Virtually any organization that provides services and bills Medicare and Medical Assistance are required to inform patients of these rights when they start providing services to the individual.

So what does the Patient Bill of Rights say?

  • Information Disclosure: You have the right to accurate and easily-understood information about your health plan, health care professionals, and health care facilities. If you speak another language, have a physical or mental disability, or just don’t understand something, help should be provided so you can make informed health care decisions.

And here is the notice about choice:

Choice of Providers and Plans: You have the right to a choice of health care providers who can give you high-quality health care when you need it.

Additional points in the Patient Bill of Rights include:

  • Access to Emergency Services: If you have severe pain, an injury, or sudden illness that makes you believe that your health is in serious danger, you have the right to be screened and stabilized using emergency services. These services should be provided whenever and wherever you need them, without the need to wait for authorization and without any financial penalty.
  • Participation in Treatment Decisions: You have the right to know your treatment options and to take part in decisions about your care. Parents, guardians, family members, or others that you select can represent you if you cannot make your own decisions.
  • Respect and Non-discrimination: You have a right to considerate, respectful care from your doctors, health plan representatives, and other health care providers that does not discriminate against you.
  • Confidentiality of Health Information: You have the right to talk privately with health care providers and to have your health care information protected. You also have the right to read and copy your own medical record. You have the right to ask that your doctor to change your record if it is not accurate, relevant, or complete.
  • Complaints and Appeals: You have the right to a fair, fast, and objective review of any complaint you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about waiting times, operating hours, the actions of health care personnel, and the adequacy of health care facilities.

Some additional practical advice to assure that you are adequately informed to make the best possible choices:

  1. Ask to speak to the assigned case manager within 24 hours when your loved one enters the hospital. Ask questions and share your concerns. Ask about the next steps in care and get the case managers advice about any after-care needed. For example, does the case manager expect that your loved one will go right home? Is home health care recommended? Or are the care needs more extensive and require an inpatient rehabilitation facility? Get a list of providers that you can contact to find the right fit for your loved one’s needs. There may be a need for a different level of care than you originally anticipated. In my dad’s case, I told the case manager that my family was not interested in the facility that she chose; it was 45 minutes away and we wouldn’t be able to visit or advocate for him. I asked her to check availability in more local facilities that I knew and trusted.
  2. Pay attention to the care you or your loved one is receiving. Make sure you/they are getting the right treatments and medications. Don’t assume anything.
  3. Make sure staff providing care are introducing themselves and you know what their credentials are.
  4. Notice whether or not the staff are washing their hands. Hand washing is the most important way to prevent the spread of infections. Don’t be afraid to gently remind the caregiver. You and your ill loved one need to do the same.
  5. Be sure the health care professional confirms your/ your loved one’s identity before giving medications or treatments.
  6. Educate yourself about the diagnosis, services provided and the care plan. Gather information. Write down important information the doctor tells you and ask if the doctor has any written information you can take with you to look at later.
  7. Thoroughly read all forms and make sure you understand them before you sign anything. If you don’t understand something, ask for a better explanation.
  8. Make sure you understand how to use any equipment the doctor orders for your care, especially if you will need to continue use once you are home.
  9. Know the medications and why they are prescribed. Ask about the purpose and ask for written information which can be provided by the pharmacy. Know both the brand and generic names of the medications. Know the possible side effects to watch out for. Whenever a new medication is prescribed, tell the doctor about any allergies and other medications prescribed to be sure that it is safe to also take the new medication.

You have rights, you have choice and you have a voice. Use them. Aim to be an educated consumer for your loved one’s successful recovery.

Resources to help you:
Making the Right Decision For Rehabilitation Care

Ask a Social Worker

All People Matter

All People Matter

Social workers play a vital role in the nation’s health care system, helping clients get the best possible care. According to the Bureau of Labor Statistics, some of the largest employers of social workers in the health care field include hospitals, ambulatory health care services, home health agencies and hospices, and nursing and residential care facilities.

Social Workers like Lillian Chinnici, MSW LSW of Health Calls Home Health Agency know how the social determinants of health affect medical outcomes in every community. Lillian is an example of the knowledge and compassion social workers provide home health patients and their families, providing holistic, compassionate care to people living with serious illnesses that goes beyond medical care to meet the body, mind and spiritual needs of patients.


What Matters to You? Flipping Health Care

Ninety-eight year old Millie lives with her son and family in a suburban neighborhood. Millie has been in the hospital 6 times this past year for problems related to heart failure. She has been back home for the past week. Millie doesn't have much of an appetite and so when she says she would like a whole, old-fashioned deli pickle with her lunch, her son doesn't question her.

If Millie wants to stay home (she says that's her goal) there are some dietary guidelines that she needs to follow. The salt in one pickle is more than half Millie's daily allotment. Millie's heart failure requires a balancing act. The amount of salt she takes in with her food affects that careful balance.

We have entered a new age of health care. Unfortunately, we haven't see huge dramatic changes, yet. Change requires many shifts in mind set and many shifts in how health care is delivered. Health care reform will challenge each of us to change how we think. The patient plays the central role in managing their conditions and the entire health care team is there to help improve health.

Flipping Healthcare

Healthcare should be flipped, delivered in a way that’s convenient for patients, not their providers, says Institute for Healthcare Improvement president and CEO Maureen Bisognano, who used the phrase in her National Forum keynote last month.

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The idea, borrowed from education ( “flipping the classroom,”) is that healthcare should be provided in a way that meets what the patient wants, and providers should be allowed to teach caregivers what they need and that caregivers should listen. “We need to flip from focusing on the medical condition to focusing on the patient,” Bisognano says. In this framework, the balance of care is “flipped” from the hospital to the community.

In many respects, the healthcare community has been health professional-centered. If a person is not feeling well, a call is made for an appointment and the patient goes to the doctor’s office or hospital. People are asked “what’s the matter, what’s wrong?” as opposed to “what matters to you?”

In the “flipped” care philosophy, the focus moves away from health care to health.

Home health care providers are at an advantage with this focus. We negotiate, as invited guests, the focus of the care being delivered. Home health care professionals are focused on care delivery as a care team, at work with other community professionals to treat patient- where they live. The balance of power shifts away from the healthcare team to the individual and their family in a health partnership to support the patient and family build skills and confidence they need to lead active and fulfilling lives.

What are the risks to the person’s safety in their home?
What are the risks to the person’s health in how they live?
What matters to the person?
What are the person’s goals?
What does he hope to gain from our visits?

Visits to a person’s home provides clues to what is important, what may affect her health, what lifestyle choices may need to be negotiated for change in order for health to be realized. Flipping care requires active listening to the patient: finding out what is important, what can be negotiated, and then aid and inspire patients to become informed about their conditions and take an active role in their treatment.

For Millie, flipping healthcare could mean understanding that the deli pickle is not a point of negotiation. She may decide that she is not willing to stop eating the pickle. Flipping care means that the home care team gives her the knowledge to make the decision to eat the whole deli pickle, and budget the balance of her daily salt allowed by understanding food labels and using a food chart to find the salt values in foods without labels.

Knowledge is power. This power, coupled with understanding the early signs and symptoms of heart failure trouble, will give her a plan with actions steps to communicate with her doctor on the telephone. Together they make medication adjustments. This power is much more preferable than treating the consequences of poor health management with another hospital stay.

Flipping healthcare matters to Millie.

Difficulty Understanding Basic Health Information May Lead to Higher Risk For Death

Health literacy is a person’s ability to understand instructions on prescription drug bottles, appointment slips, medical education brochures, doctor’s directions and consent forms, and the ability to negotiate complex health care systems. Health literacy is not simply the ability to read. It requires a complex group of skills including reading, writing, and reasoning to understand concepts inorder to make health behavior decisions.

Medication bottles collected in medicine cabinets across the country simply read: “Take as directed”. For those adults who have limited health literacy, or are limited in their ability to make sound health care decisions, this has little meaning. Take Charlie, for example,who has bronchitis and has been taking a swig from that cough medicine the doctor prescribed that has codeine in it. His caregiver discovered he was drinking from the bottle after she found him on the floor in his kitchen. He had been drinking the medicine staight from the bottle without measuring the amount every 2 or 3 hours. If a little is good for you, more is better, right?

More than 75 million English-speaking Americans have limitations in their ability to make health care decisions. Health literacy can be improved. Patient teaching handouts, medical forms, and health web sites make it easier to understand and improve patient-provider communication.However, the most important strategy for people with limited health literacy is to have a person with them to advocate for them at doctor appointments, during short procedures and especially while in the hospital.

What is your biggest concern for someone you love with limited health care literacy who requires health care?