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«Serving Colorado’s Front Range The Kingfisher, calm and at peace, nested upon water, quieter of restlessness. A Patient & Family Guide to Hospice ...»

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Patient & Family Guide to

Hospice Care

Serving Colorado’s Front Range

The Kingfisher, calm and at peace, nested

upon water, quieter of restlessness.

A Patient & Family Guide to Hospice Care

To All,

I just want you to know what an honor it is for Halcyon to be

invited into your lives in such an intimate way. We are very much

committed to living up to your expectations, wishes and desires.

Halcyon is a clinician owned hospice. It’s vision is to provide

patient centered care to people who reside in both rural and urban settings.

This is a strong vision. It means that we will go to where you are;

anywhere along the front range of Colorado. It also means that we will listen to you. We have experience, we are compassionate and we are innovative. Our goal is to use these qualities to the extent of our ability, on your behalf, to help make your intentions possible.

Halcyon is a name that has meaning. It stands for the Kingfisher; a legendary bird that nested upon disrupted waters and brought calm and peacefulness. Halcyon wants to bring calm and peacefulness to you as well. We want to live up to our namesake.

Relationships form the foundation of the best hospice care. We will never lose sight of that. Our relationships to you, to one another and to our mutual community are integral to what makes our vision unique. We want everyone we touch to feel they have touched us.

Thank you very much for allowing us to be part of your lives.

Rod Graber, Halcyon Hospice

Halcyon pledges that it will:

• Encourage and support care and services that are safe, patient-centered, effective, efficient, timely, and equitable.

• Uphold high standards of ethical conduct in advocating for the rights of patients and their family caregivers.

• At no time consider a patient’s financial disposition for how care will be provided;

at admission, in stay, or at discharge.

• Preserve and promote the inherent potential for growth within individuals and families during the last phase of life.

2 A Patient & Family Guide to Hospice Care Guide to Hospice and Palliative Care About This Guide................................. 5 Information for Getting Started.....................6 Understanding Hospice and Palliative Care The Role of Family and Caregiver The Hospice Team Paying for Hospice and Palliative Care Information on Rights and Responsibilities.......... 13 Patients’ Rights Patient and Family Responsibilities HIPAA Compliance – Privacy and Confidentiality Healthcare Decisions and Advance Directives Information and S

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Information for Getting Started Understanding Hospice and Palliative Care Centuries ago, the word “hospice” described a place where weary pilgrims could stop, rest, and refresh themselves before continuing on their journey.

In 1967, a British physician, Dr. Cicely Saunders, began using the term to mean a new kind of care for patients who were dying. She founded St.

Christopher’s Hospice in a London suburb.

Patients did not come to St. Christopher’s with the idea of finding a cure.

They came for support in managing pain. Their goal was to maintain their quality of life as much as possible, even in the face of a terminal illness.

Since Dr. Saunders founded that first hospice, the hospice movement has spread around the world. Today, patients and their families turn to community-based hospice programs for supportive, quality care near the end of life. Hospice care is provided wherever a patient lives – their private residence, adult family home, assisted living facility, or nursing facility.

What We Mean By Hospice Care and Palliative Care Hospice care refers to end-of-life care in which the goal is comfort, symptom management, and quality of life, as opposed to finding a cure. It is coordinated and provided by an interdisciplinary care team – one that includes the patient’s physician, plus professionals in nursing, social work, pastoral care, and so on.

Hospice care generally isn’t considered an option until a person is terminally ill, with a probable life expectancy of six months or less. Hospice care is intentional in serving not just the patient, but the patient’s family as well.

Palliative care, like hospice care, has as its goal the patient’s comfort, pain and symptom management, and quality of life. Unlike hospice, it is not related to prognosis, and a patient may be seeking curative or life-prolonging treatment and still benefit from palliative care. Palliative care may be appropriate at an earlier point in a prolonged illness; whereas hospice care is the care provided nearer the end of the patient’s life.

Think of it this way:

Palliative Care = Comfort Care Hospice Care = Comfort Care at the End of Life 6 A Patient & Family Guide to Hospice Care

–  –  –

To get the most out of hospice care, it should not be put off until a point at which much of the opportunity to benefit from a focus on comfort care and quality of life has passed. However, even when death is imminent, there is still benefit in hospice support.

The Role of Family and Caregiver Not so long ago, it was commonplace for people to die at home, surrounded by loved ones and familiar possessions. Now, many people die in hospitals, surrounded by tubes and monitors and other high-tech equipment. One goal of hospice care is to give patients who are terminally ill an alternative to this institutional setting that is more home- and family-focused.

Families who have been supported by a hospice program in caring for a dying loved one most often consider it a positive, empowering experience. Hospice team members are trained to be sensitive to the needs of patient and family.

If your mother wants to die at home and you’re able to support her in this, but are worried about the skills and support you’ll need, hospice will give both you and your mother the training and help you.

Hospice programs also offer options for respite care. Respite care is having someone else care for the patient for a few hours or a few days so that the caregiver can have a break. It provides much-needed time for rest and renewal.

If you are considering taking on the role of family caregiver for a loved one in hospice care, talk with hospice staff. Find out what the expectations would be and what kinds of help and support are available. If you can, talk with others who have made this commitment. What were the challenges they faced? What suggestions would they have? Would they do it again?

Becoming a caregiver is a big, personal commitment. It is not for everyone.

But for those who choose it, it can be an incredible gift, as well as a personal experience unlike most any other. Take time to make a good decision for yourself and for your loved one.

If your loved one is not living with you or needs to move to an alternate living arrangement, remember that your love and care remain important. Let the hospice team know how they can best communicate with you and provide support.

8 A Patient & Family Guide to Hospice Care

–  –  –

Chaplain or spiritual counselor – who is available to visit, listen, and provide support to both patient and family. Chaplains (or spiritual or pastoral care counselors, as they are often called too) take a non-denominational approach, and can also connect you or your loved one with someone representing a

preferred religious faith or tradition. The hospice chaplain can:

• meet with you or your loved one to share hopes, fears, dreams and concerns

• support you in your exploration or struggles with spiritual and/or emotional issues

• provide spiritual counseling, while respecting your personal beliefs

• pray with you, if requested

• assist you in planning a funeral, memorial service, or other similar gathering.

Therapists – including physical, occupational, and speech therapists. They often play a role during hospice care in promoting the independence, quality of life, and safety of the patient and family. The hospice nurse can help determine if a referral to one of these therapists might be helpful. Therapists


• assist in identifying and filling medical equipment needs, such as a handheld shower, bath seat, walker, etc.

• help identify any safety hazards in the home

• help the patient improve strength and mobility through the use of equipment and exercise programs

• evaluate leisure interests and teach skills and activities that improve quality of life

• demonstrate safe patient transfer techniques

• teach exercises for a bed-bound person that can relieve pain and discomfort caused by lack of mobility

• evaluate communication or swallowing difficulties and recommend ways of handling these.

Other types of specialized therapy may also be available to help promote relaxation, improve sleep, reduce pain, and enhance comfort and quality of life in other ways.

10 A Patient & Family Guide to Hospice Care

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Here are two points to remember if you are receiving care under the

Medicare Hospice Benefit:

First, if you access care independently without consulting the hospice team, neither the hospice program nor Medicare (or Medicaid, if applicable) will pay for those services; and Second, if you decide to change from comfort care to active treatment that seeks a cure, you will need to revoke your Medicare (or Medicaid) Hospice Benefit and revert to your regular Medicare or Medicaid benefits, since your goals would then be different from the goals of hospice care.

If you have private insurance: Hospice staff will work with you to determine the scope of your coverage and arrange for payment by your insurance plan.

If you have limited or no insurance coverage for hospice care: Hospice staff will work with you to determine your eligibility for financial aid and/or set up a reasonable payment schedule.

12 A Patient & Family Guide to Hospice Care

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Patient and Family Responsibilities Along with patients’ rights, your hospice program will let you know what it expects of the patients and families it serves. Patient and family responsibilities include such things as providing accurate information, keeping the hospice team informed of changes, keeping the home where care is being provided clean and safe, and learning and following basic steps for preventing the spread of infection, especially handwashing.

13 A Patient & Family Guide to Hospice Care

HIPAA Compliance – Privacy and Confidentiality Hospice patients are covered by the Health Insurance Portability and Accountability Act of 1996, or “HIPAA.” Information on HIPAA policies and procedures will be provided to you. If you have questions or concerns about privacy or confidentiality, ask a member of the hospice team.

Healthcare Decisions and Advance Directives Hospice patients are entitled to make their own healthcare decisions as much as possible and for as long as possible. When a patient is no longer able to understand the medical options and make decisions, the patient’s representative steps in and makes them on the patient’s behalf.

–  –  –

Another healthcare planning document you may hear about is called a physician order on life-sustaining treatment (a “POLST” form) or a donot-resuscitate (or “DNR”) order. These are orders a physician enters in a patient’s medical record after discussion with the patient or patient’s representative. They notify emergency response personnel and other health care providers that cardiopulmonary resuscitation, or “CPR,” should or should not be started if this person’s heart or breathing were to stop.

The hospice social worker can answer questions about advance directives, and a member of the hospice team will discuss these issues with you when hospice begins.

14 A Patient & Family Guide to Hospice Care Information and Skills for Caregivers Keeping a Care Log and Communicating Effectively One of the first things a caregiver needs to get in the habit of doing is keeping a care log. It doesn’t have to be fancy. We’ve included a form on pages 50. You may download the form or print extra sheets online.

–  –  –

0 through 10, with “0” meaning no pain, and “10” meaning the worst possible pain. The hospice nurse will ask what level is acceptable.

How does the patient describe the pain he or she is experiencing? Here are some words often used to describe different levels of pain? Ask the patient to use the words that best fit.

sharp shooting aching stabbing pulsing crushing tingling dull cramping itching burning cutting throbbing The type of pain is as important as its intensity in determining the best medications for the patient. Other medications may be prescribed, in addition to the regular pain medication, to better control a particular type of pain. These additional medications may be more familiar to you as treatment for other problems, such as depression, muscle tension, anxiety, or inflammation. However, they may also be used to manage pain.

A hospice patient may have concerns about pain medications. Here are some

examples, along with points to keep in mind:

“The pain medication makes me too sleepy.” Some pain medications can make you feel drowsy. This sleepiness usually goes away after a few days. If you have lost sleep because of pain, you may sleep more the first few days after beginning your new medication, because your body is finally relaxing.

The medications can be adjusted to decrease sleepiness but maintain comfort.

“The pain medicine makes me constipated.” Constipation is a common side effect of many pain medications and may not go away even after a patient becomes used to a medication. Other factors may also be contributing to constipation, such as decreased activity, decreased appetite, or a disease process. Constipation may be treated or prevented by balancing the effects of medications and decreased appetite and activity with stool softeners and laxatives.

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