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The hospice philosophy maintains end-of-life care should emphasize quality of life. At its core is the belief each individual has the right to die pain-free with dignity, and families and friends should receive the necessary support to allow the individual to do so.
Hospice is about the time between an individual’s life-threatening diagnosis and death. The goal is to treat the person, not just the disease. It involves a team approach to care, including expert medical care and pain management with emotional and spiritual support.
The Alacare Hospice Team preserves the patient’s comfort and dignity during the last stages of life while supporting the family members and caregivers who provide the necessary patient care. Spiritual support is available for at least one year after the patient’s passing to ease the grief and transition of family members dealing with loss.
Checklist for Choosing the Right Hospice
If you or someone you love is terminally ill and diagnosed with six months or less to live, you may be contemplating hospice care. If you are, you are not alone. Since the hospice concept was introduced in the United States in the 1970s, more and more Americans are choosing to end their lives in hospice care.
Statistics gathered by the National Hospice and Palliative Care Organization (NHPCO) show that the number of terminally and chronically-ill patients electing to receive hospice care has grown dramatically over the past 10 years. In 2006, the organization reported that 1.3 million patients obtained services from hospice, a 162 percent increase in 10 years.
That same year, NHPCO estimated that slightly more than a third of all deaths in the United States took place under the care of a hospice program.
Hospice is a concept of care that focuses on helping the dying to end their days with dignity, without pain, in peace and in the comfort of their loved ones’ company. The emphasis is on quality of life rather than quantity. For that reason, physicians may also recommend hospice care for patients with chronic illnesses who are not terminally ill.
Care is provided by a team of health professionals and volunteers at home or in a hospice center, hospital or skilled nursing facility. Personalized plans tailored to individual needs are developed with input from the patient and family.
Is hospice care the right decision?
Hospice care covers a broad range of services, including nursing care; social services; physician services; spiritual support and counseling; home health aides and homemaker services; trained volunteer support; physical, occupational and speech therapies; respite care; inpatient care; and bereavement support. You can learn more about hospice at www.hospicenet.org, www.cancer.org, www.optionsforeldercare.com, and www.nhpco.org.
If hospice care seems to be the right decision for you or your loved one, there are a number of ways to go about find the hospice that best suits your needs.
The first step is to talk with your physician and determine whether hospice care is appropriate for you or your loved one. Only a physician may order hospice care. If your physician approves it, then begin researching what is offered in your community. Your physician may suggest a hospice facility. State health departments certify hospices, and the yellow pages also list them. If you contact your hospital, senior center, Cancer Society or United Way, they should be able to provide more-detailed information.
If you are Internet-savvy, check out the National Hospice and Palliative Care Organization at www.nhpco.org. It provides a database of hospices in each state.
Finding the right match
Once you have located local hospice-care providers, prepare a checklist of questions to help you qualify each facility and ensure that you find the right match. We’ve proposed some basic suggestions to get you started, but you will undoubtedly include more personal questions as you go along.
Ask if the hospice program can provide you with brochures covering services, eligibility criteria, costs, payment procedures, job descriptions, malpractice data and liability insurance. Getting the information in writing will ensure that you have time to thoroughly review it before making any decisions.
Inquire about professional and personal references. Is the program willing to give you written references and the names and phone numbers of professionals such as hospital and community social workers who have used their services? What about patients or their families? Check with the Better Business Bureau, Consumer Bureau and Attorney General’s office to see if there have been complaints or censure.
If you are satisfied with the legitimacy and credibility of the hospice program, and are comfortable so far with your communications, it’s time to get down to specifics and inquire about the admission process, type of care, how it will be delivered, by whom and at what cost.
The hospice should draft a professional plan of care tailored to individual patient and family needs. Find out who prepares the plan and who receives copies. Ask if it’s possible to see a sample plan. Look it over to see if it provides detailed information such as names of caregivers and supervisors, schedules and phone numbers.
Learn as much as you can about the evaluation and planning process. Even if your physician provides a referral for hospice care, there is no guarantee that the patient will be accepted into the program.
Understand who is responsible for conducting the initial evaluation of the patient. Who determines the services that will be required? What happens if hospice care is being provided at home? Is the evaluation done in person or by phone? How involved will you or your family be? Inquire if other professionals such as physicians or social service agencies will be consulted about the plan.
Involving the family
Check to see if the plan takes into account what the patient is capable of doing for her or himself. This is important not only in terms of managing costs, but also in maintaining the patient’s sense of self-worth and independence.
Clarify the role of family members and friends. Does the hospice require that a family member be designated as the primary caregiver? You need to know how much responsibility your or your family will have and be up to speed on resources the hospice might provide.
Hospices can often help families and friends coordinate schedules and find people to fill in when job demands or vacations arise. If no family or friends live close by, the hospice may be able to suggest alternatives.
Research what services the hospice makes available in your geographic area and how long it takes to get them. Some hospices, for example, provide rehabilitation therapists, pharmacists, dietitians and even medical equipment. These specialized services can make a difference in the patient’s quality of life.
The time may come when it will be necessary for your loved one to be admitted to an in-patient facility. Ask if the hospice offers in-patient care and find out where it is delivered. Make sure you understand admission policies and procedures and take a tour of the facility. Talk over the “what ifs” with staff so you know what to expect should the need arise.
Confidence in the services of the hospice organization is critical. What is more difficult but equally important to quantify is judging the quality of the team that will be providing care.
Don’t feel that you are being rude or insulting by questioning the training and qualifications of the staff and volunteers or inquiring about reporting mechanisms. You need to know who will be responsible for providing care and for monitoring the team. Ask for references and follow up on them.
Go over sample reports with a staff member so that you know what the parameters are. Look to see whether or not evaluations are conducted on-site (at home or in a facility). Make sure that staff are licensed and bonded. Review the hospice’s patient rights and responsibilities guidelines.
Problems and concerns
If something goes wrong or you have questions, you need to know how the hospice handles problems and complaints. Does it have a 24-hour hotline you can call? Who staffs the calls and what are their qualifications? Find out if you can visit the hotline team. Hearing the tone of the team’s responses and content of the conversations will give you a preview of the kind of treatment you’re likely to receive.
Finally, research what hospice care will cost. Medicare, Medicaid and most private insurance covers hospice care in full. Before you make any decisions, be absolutely certain you know what your resources are and what governmental and social service agencies will provide. Review billing documents and contracts carefully, and ask about financial assistance and payment plans. If necessary, seek help from professionals such as your accountant, banker, financial advisor, lawyer or insurance agent.
Doing the due diligence required to select the right hospice is time-consuming, emotional and tiring. It also can be rewarding. Once the decision is made, you may feel a deep sense of accomplishment. You may also find great comfort and peace of mind from the assurance that you or your loved one will be in the hands of a team of expert, caring and compassionate professionals.
Hospice is medical, psychological, social, and spiritual care that spans a person’s diagnosis with a terminal illness until their death.