A season to live and a season to die…

By Karen Donato
Staff Writer
    We’ve all heard the word “hospice”, but what is it?
    Some know because they have had experience with this wonderful service. Others have heard about it and just know that it means someone’s life is nearing the end. It’s a scary thought, something that most of us would rather not talk about.
    “I am not ready for that, death is not going to happen any time soon”, are also comments we often hear.
    That is what we all would like to think. In reality, we know that is not being realistic.
    The verse from Ecclesiastes 3, says this: “To everything there is a season, and a time to every purpose under the heaven. A time to be born, and a time to die.”
Houlton Pioneer Times Photo/Karen Donato
THE HOSPICE TEAM — Trained professionals and volunteers of Hospice of Aroostook are committed to providing you with quality hospice care in the comfort of your own home.  They are responsible to provide comfort effectively, efficiently and professionally. Seated from left, Jean Reeves, volunteer co-coordinator and Saundra Scott-Adams, executive vice-president of Visiting Nurses of Aroostook. Standing from left, Kathy Ledger, home-health aide, Diane Lane, R.N., Mim Sloat, R.N., clinical supervisor, Jane Zimmerman, R.N., Albert Burleigh, spiritual director, and Karen Umphrey, medical social worker.
    Statistics show that the population of the northeastern United States does not utilize the services of hospice, as much as other parts of our country. Hospice of Aroostook wants to change these statistics with a look into the hospice program and what it offers to the people of this area. November is National Hospice Month and with this article and others to follow, Hospice of Aroostook hopes you will better understand their program.
    Hospice is a service that provides you or your loved one the choice to be where you or they are most comfortable when the end of life is near. It is a team that includes the medical director, registered nurses, a medical social worker, home health aides, the volunteer coordinator, the spiritual director, various therapists, volunteers and office personnel.
    Hospice of Aroostook is a non-profit organization governed by a local board of volunteers. They are committed to ensuring your rights and privileges as a health-care client. Their handbook states that it is their philosophy to care for those with a terminal illness and their loved ones. Hospice offers a coordinated health care program with a palliative focus, meeting the physical, psychological, social and spiritual needs of the whole person, their family and significant others, 24 hours a day, 7 days a week.
    Hospice affirms life and concentrates on allowing people to live fully and comfortably. Hospice respects the rights of people to choose how and where to live and die. A medically directed interdisciplinary team consisting of you and or your family, trained volunteers and professionals, provides hospice care. The care they provide is dependent upon the needs of you and your loved ones.
    “Hospice is a service you are entitled to,” says Jane Zimmerman, R.N., “Hospice is about living a quality of life toward the end of your life. Hope! Hope that there is no pain, hope that a child will make it home. Hope that the client will make it to a wedding or see the birth of a child. It is a service that is based on hope. Hope for whatever.”
    Hospice is a gift that provides the patient with the time to take care of important issues, make amends with friends or family members. So much can be accomplished and sometimes in a short amount of time.
Houlton Pioneer Times Photo/Karen Donato
MEDICAL DIRECTOR — Well-known and respected physician, Dr. Ted Sussman of Houlton Regional Hospital leads the Hospice of Aroostook team with experience and knowledge.
    If you are in the care of hospice it does not mean that you must be homebound. Under hospice you can go fishing, go out in the car, do just about anything you choose.
    Many people assume hospice is just for those with cancer, however it is for anyone with a terminal illness. Your primary care physician needs to refer you in order to receive hospice care, but you can also ask him or her to do this.
     Once the patient is in the hospice program they remain under the care of their own primary physician. However, there are times when the doctor may not be available and Dr. Ted Sussman, the medical director of the program will oversee the care. Sussman has been the hospice medical director for about ten years.
    Who is eligible for hospice? Anyone that has a life expectancy of six months or less, desires a life without pain, who wants to stay home as long as possible and who has a primary care person can utilize the services.
    Once the client has been accepted the hospice team is put in place to provide for the various needs.    One of the team members is medical social worker, Karen Umphrey. She can take what seems like a mountain to the patient or caregiver and more than likely make it into a molehill. Many families become overwhelmed with financial worries. More often than not the caregiver finds out there is not enough insurance coverage or the bills are mounting up and there isn’t enough money to meet the needs. Umphrey has experience in this area. She knows the agencies that can step in and take care of each of life’s roadblocks. Once the financial pressures are diminished, both the client and the caregiver can begin to spend the quality of time so necessary. Other times Umphrey can locate a certain piece of equipment that the patient may need, lend an ear, and be a comfort to the caregiver in the home. Umphrey also assists during the bereavement time. It is important to keep a calm home.
    Umphrey says that sometimes the service is put in place and the patient or caregiver decides it is too soon. That is not a problem. They have the option to revoke the decision. Then later hospice can be reactivated.
    Other support people are the home health aides, they may come daily or just a few times a week. That depends on each case and the patient’s wish. They bathe the patient and try to make them comfortable. They change the bed and sometimes do some light housekeeping. They help educate the caregiver and the family in doing a variety of things for the patient. Pain is always an issue and the aides can show the family how to move the person to be more comfortable. They help answer some of their questions and are the liaison between them and the registered nurse on the case.
    Kathy Ledger, a home health aide says, “It’s rewarding to see family members gain confidence once they are shown how to do certain things to help with the care.”
    “As an aide, I am in constant touch with the primary nurse to see that the patient’s needs are being met.” she added.
    Jean Reeves is the volunteer coordinator. She sees that the members of the team know when and where they are supposed to be. She supervises the volunteer program. Volunteers must complete 30 hours of coursework before they can work in the field. There is no cost for the classes. Applicants must complete an application, pass a background check, a criminal check, participate in an interview and be evaluated during the training process. There are currently 32 hospice volunteers with seven more completing the course at this time. So far this year they have accumulated 1,014 hours of service and logged 5,482 miles.
    Umphrey says volunteers must be comfortable with death and dying. They give freely of their time, volunteers are not paid. They often sit for hours holding a patient’s hand, or just listening while caregivers share their feelings. Volunteers are there to give the family some respite. They usually spend a couple of hours a day, but not through the night. If the family is not comfortable with a volunteer, they can contact the agency and a change will be made.
    Mim Sloat, a registered nurse and the Clinical Supervisor says that volunteers are often ones that have been from a family that has received hospice care and want to give something back. They are usually excellent volunteers because they have had the experience and know just how to help.
    One misconception many families have regarding the services of hospice is that there will be someone with the patient 24 hours a day. The team members are available 24 hours by phone, but not to stay at the client’s home.
    The Houlton office of Hospice of Aroostook services clients from Bridgewater to Danforth and Houlton to Patten, and some of the outlying towns. Jane Zimmerman and Diane Lane, both registered nurses are the primary nurses for these areas.
    They both say that it is the patient’s choice where they want to die. It might be at home, a boarding home, the nursing home or even a camp out in the middle of the woods. The hospice team will go wherever they are needed. Their services are patient-driven.
    Umphrey says, “What do you want? How can we help you?”
    “We make all the calls to get equipment and medications, and after the death we make all the calls to have everything removed quickly from the residence to make that transition easier for the family,” she added.
    Another important team member is the chaplain. Albert Burleigh is the Spiritual Director for the hospice office in Houlton. Burleigh depends on the team to notify him if a patient wants to have a visit from him.
    Burleigh said, “Sometimes I am heavily involved and sometimes not at all. Every situation is different.”
    When death does occur, the nurse in charge makes the calls to the appropriate agencies and to the funeral home. They will stay with the family until the body has been removed.
    Following the death of the client, hospice continues to be in touch with the family for 13 months. There is always a representative from the office that attends the calling hours or funeral service, and each family receives a sympathy card and a rose. The families receive mailings and notes for six to seven months from the hospice team. On Memorial Day they receive a geranium. The caregivers are as important as the patient. If they need additional counseling services, the team will also assist with this. All information is held is strict confidence.
    If you would like to know more about Aroostook Hospice please call 532-9261 or 1-800-244-4236.    
    Next week there will be an article devoted to the day in the life of the primary nurse and one family’s experience with hospice and its services.