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«Pat left her creative imprint in every corner of M. D. Anderson during 20 years as an accomplished graphic designer in the Department of Medical ...»

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Patient and Family

Symptom Control and

Palliative Care

Acute Inpatient Unit

T he Symptom Control and Palliative Care Acute Inpatient

Unit Handbook is made possible by a generous donation from

Patricia D. Bohan. It is a fitting tribute to the exceptional skill and

compassionate care that Pat received from the Symptom Control and

Palliative Care Acute Inpatient Unit staff, while she was a patient in 2005.

Pat left her creative imprint in every corner of M. D. Anderson during 20 years as an accomplished graphic designer in the Department of Medical Graphics & Photography. As a young adult, the experiences she gained working as a licensed vocational nurse inspired Pat to serve others throughout her life.

Palliative Care Improving Quality of Life The World Health Organization defines palliative care as: “The approach to care that improves quality of life for patients and families facing a life threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial and spiritual problems.” When facing advanced disease or severe pain, quality of life becomes precious. The Symptom Control and Palliative Care Acute Inpatient Unit at The University of Texas M. D. Anderson Cancer Center is dedicated to helping patients have the best quality of life.

M. D. Anderson operates the largest cancer symptom control and palliative care program in the United States. Our research programs strive to find new ways of assessing and managing severe physical and psychosocial symptoms in advanced and terminal cancer patients. We also offer continuing education opportunities for cancer specialists, community health care workers, medical students and residents who want to learn the latest in palliative cancer care, end-of-life care and cancer rehabilitation.

It is our goal that this booklet will help you and your family understand how to cope with and treat your symptoms. We are here to help you make life with cancer as best as it can be.

i Table of Contents Palliative Care Service

Outpatient Center

Inpatient Unit

Mobile Consultation Team

Interdisciplinary Team

Pharmacist

Physical and Occupational Therapists

Nursing Team

Social Worker

Chaplains

Massage Therapists

Music Therapist

Pediatric Outreach Liaison

Case Manager

What to Expect in the Palliative Care Unit

Understanding Symptoms and Their Management...........13 Pain

Loss of Appetite and Weight Loss

Anxiety

Constipation

Dehydration

Delirium

Depression

Dry Mouth

Shortness of Breath:

Fatigue

Insomnia

Nausea

ii Emotional Needs

Coping

Relaxation and Coping Resources

Videos

Spiritual Resources

Other Resources for Your Mind and Spirit

Place … of wellness

Thanksgiving Tree

Maps

Discharge Planning

Advance Directives

Medical Power of Attorney

Living Will (Directive to Physicians and Family or Surrogates)......... 55 Out-of-Hospital Do-Not-Resuscitate Order (DNR)

Frequently Asked Questions

Hospice Planning

–  –  –

Three levels of care make up the Palliative Care Service

One or more of the following health care teams will treat you:

1. Supportive Care Center (for patients who do not require 24-hour care)

2. Inpatient Unit (for patients who stay in the hospital, requiring more than 24-hour care)

3. Mobile Team (for inpatients and outpatients) Outpatient Center The Supportive Care Center is where palliative care doctors see patients on an outpatient basis. Even if you do not have an appointment, please contact us if you would like to get more information or receive care. Our nurses and staff will listen to your needs to help you. We are open Monday through Friday, 8 a.m. to 5 p.m.

Our phone number is 713-792-6072.

Inpatient Unit This specialized unit has 12 private rooms for patients who receive care on an inpatient basis. Specially trained staff cares for patients and families who are experiencing physical and emotional distress.

Your medical team meets daily to discuss your plan of care. They will assess your condition to make sure your needs are being met. (On the weekends, you may have a different medical team, but they will be aware of your plan of care.) Mobile Consultation Team This team of doctors, fellows and advanced practice nurses respond to patient referrals by visiting patients in inpatient and outpatient settings.

Interdisciplinary Team In many cases, symptoms may be complex. For example, if you have shortness of breath and at the same time you have anxiety, you may feel the shortness of breath more than the patient who has shortness of breath without anxiety. At the same time, shortness of breath by itself may cause anxiety. In addition, anxiety may be caused by other factors, such as worries about the cancer, the future, the family or financial issues. To be able to treat your symptoms well we need to know more about you, the different symptoms you have and your overall goals. This will require many questions to you and your family by different members of our team.





This team is called the interdisciplinary team and its members meet regularly to discuss your condition and try to help you achieve your goals.

The interdisciplinary team is made up of the following members:

Doctors You may meet different types of doctors.

• The attending physician is a doctor with specialized training in symptom control and palliative care. This person leads the medical team and will visit you daily to assess your condition and approve any changes in your care.

• Fellows are doctors who have completed a medical residency and are completing additional specialty training.

Pharmacist A pharmacist will make daily rounds with your care team, and will review your medicines and discuss any medicine-related issues you may have.

The pharmacist is also involved in the discharge process. When you are discharged, you will receive information on the medicines you need to take.

Physical and Occupational Therapists Physical and occupational therapy will help you attain the best quality of life possible. Therapy treatments are designed to improve your ability to do the things that are meaningful to you.

Physical and occupational therapy is helpful to all patients. Although you may not be able to do demanding exercises, you can still benefit from receiving therapy.

Our team works with patients on all skill levels, and they will create a routine that works best for you.

Nursing Team Another element of your clinical care team is the nursing staff. The Palliative Care nursing team is made up of nurses and other clinicians.

• Advance practice nurses (APNs) are nurses with advanced degrees who work closely with the other members of the medical team and treat patients during the week.

• The advanced practice nurse counselor is a nurse with an advanced degree and extensive experience in counseling and supportive care. This team member becomes involved in care particularly when patients and families are struggling with emotional crises.

• The clinical nurse specialist (CNS) is a nurse with an advanced degree and extensive clinical experience. The CNS focuses on supporting clinical nurses in care planning and implementation.

• A clinical nurse will admit you to the inpatient unit by completing a nursing assessment. He or she will be in charge of your daily care and is the primary coordinator of care for the team. A clinical nurse not only provides medicines and treatment, but also is a specialist in physical and emotional symptoms.

• The certified nursing assistant (CNA) helps the clinical nurse in your daily care, particularly by monitoring your vital signs, helping you wash and bathe, and providing treatment to make you feel more comfortable. The CNA is knowledgeable about hospital resources and procedures, and he or she will help you communicate as needed with the team.

• The inpatient service coordinator (ISC) sits at the front desk in the nursing station. The ISC helps patients and team members by coordinating requests for help, and also is responsible for scheduling tests and procedures and managing patient charts.

An associate director and two assistant nurse managers lead the unit. Each shift also has a charge nurse. The nursing managers assure that adequate resources are available for excellent patient and family care.

Social Worker The social worker is highly skilled and can provide free short-term counseling.

He or she serves as a link between you, the health care system and the community, and can help identify appropriate resources for your specific needs. The social worker arranges family meetings, counsels patients and families, and helps with requests for work release letters, airline letters and advance directives.

Chaplains Chaplains at M. D. Anderson have advanced degrees in theology and clinical pastoral education and specialize in hospital ministry to support you spiritually.

A chaplain will visit your room to get to know you and your family, and is available for prayer, pastoral guidance and to facilitate any spiritual practices you have. The chaplains’ training prepares them to counsel all people regardless of faith or tradition.

Massage Therapists If you wish, you may receive a massage treatment that may help ease physical and emotional pain. The massage therapists can also show your family and caregivers how to use touch to relieve your stress and frustration.

Two registered and certified massage therapists are part of the palliative care team. They will consult with your doctor and other health care providers about your care. The massage therapist is available two days a week.

This is a free service.

Music Therapist A board-certified music therapist uses music therapy to achieve therapeutic goals and improve quality of life. The music therapist develops goals tailored to meet your unique needs. Prior musical training is not required to benefit from personalized sessions. The important factor for you and your family is to choose music you enjoy. The music therapist has many instruments if you choose to play a selection.

Pediatric Outreach Liaison Illness, especially cancer, can be very confusing to children. They may not fully understand what is happening to their loved one.

The role of the pediatric outreach liaison is to help you discuss difficult issues with children, such as the diagnosis and coping with the hardships of treatment and side effects.

Children usually have many questions that may be hard to answer. The pediatric outreach liaison can teach you how to talk openly and honestly with them.

Patients and family members with children frequently ask:

“I want to protect my children. How do I share this information with them?” Children know when something is going on in their family. While the cancer diagnosis is indeed devastating, children can imagine things much worse, and at some ages may even feel responsible for the “bad” things that are happening in their family. Honesty is the most important factor in helping children deal with the cancer diagnosis of a loved one.

“Why should we contact the pediatric outreach liaison?” In order for children to understand what is happening, it is important that they know you respect them as valued members of your family. Therefore, it is important to openly discuss the illness with them. Additionally, having an honest dialogue helps to set the stage for ongoing open communication.

The pediatric outreach liaison will help you and your family determine how to best help the children and what approach to use, at whatever stage of the illness.

They can talk with the children and assess their understanding of your illness and prognosis, and their emotional response to the illness and treatment. The liaison can also be present to help you talk with your children about your cancer.

The pediatric outreach liaison is available Monday through Friday, 8:30 a.m.

to 5 p.m. and by appointment. For information or an appointment, please call 713-792-2489 or tell your nurse.

Case Manager The case manager may visit you and your family while you are in the hospital to discuss possibly continuing care or discharge needs for when you leave M. D.

Anderson. He or she also provides information to your insurance companies about the care you are receiving, to justify payment for services.

What to Expect in the Palliative Care Unit The goal of your admission to the Palliative Care Acute Inpatient Unit is to improve your quality of life. We will help you and your family manage your symptoms and make decisions about your care.

Since we measure your discomfort based on what you tell us, we often may ask you questions about your symptoms. We rely on you to inform us if you are in pain, for example, or if you feel nauseated. If you think that we are not addressing one of your symptoms, please let us know.

It is likely that we will need to give you medicine on a regular basis to treat most of your symptoms. If your symptoms get worse, be sure to tell your nurse.

We may be able to increase the dose or try a different medicine that works better for you.

To make your stay in the Palliative Care Inpatient Unit more pleasant, try to:

• Stay active. If you are able, leave your room for a walk. Places for relaxation include The Park on Floor 2. Physical and occupational therapists can help improve your activity level.

• Take advantage of resources. Many programs and services are available to support and encourage you.

• Bring items from home like pictures and personal keepsakes.

• Ask people to visit you. Enjoy a meal with your friends or family. You may order food from outside the hospital, too.

Include your family in your care plan. With your permission, they will meet with you and your health care team to discuss your condition and care.



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