Today, there are more than 40 million Americans over 65 years old in the United States. Within seven years, that number is expected to rise to more than 70 million. Particularly interesting is the fact that the over-65 year-old population is growing faster than the overall US population and the over-85 year-old age group is growing the fastest of all. This increase in the eldest American population raises particular concerns in regard to increased burden on caregivers who simultaneously are decreasing in number. In Midcoast Maine, this situation is complicated by Knox County’s status as being the second oldest county in the oldest state in the USA.
Who will take care of these frail patients, who often can no longer take care of themselves, through the end of their lives?
Dealing with declining health and death of elders will become a greater responsibility with each passing year. Many families are already greatly stressed by this situation. In particular, they are unprepared to honor their loved one’s wishes to spend their remaining life and death at home, where demands on family caregivers are greatest. The choice of nursing home placement may exist for some patients but many families cannot afford that and most patients don’t want that for their final years.
Sadly, many patients and families waste precious time avoiding enrollment in hospice care for fear that may mean “giving up”. Some patients and families refuse to accept the inevitability of death and think avoiding hospice will magically avoid death. Ironically, the most common complaints hospice staff hear from families who finally accept hospice is that “we wished we took advantage of this a lot sooner.” These families often realize the wonderful services hospice provides only when they have labored on their own for many months. They find hospice provides outstanding support at little to no added cost to the patient and family.
So, what are all the wonderful services that hospice provides? Hospice is an insurance benefit covered by Medicare and all health insurers, designed to help families manage and cope with declining health at the end of life regardless of age or diagnosis. For patients whose doctor believes that the patient may not survive more than six months, the following are offered:
Doctor or Nurse Practitioner house calls – For patients who are home bound due to declining health, a visit from a well-trained physician or nurse practitioner is greatly appreciated. Most families are astonished that in 2013, house calls by doctors still exist.
Routine Nurse house calls – For all hospice patients, a nurse evaluates needs and guides treatment with the supervision of a physician. The nurse will come as often as needed, from daily to every two weeks.
Urgent Nurse house calls – Even after hours and into the “wee” hours of the night, both a doctor and nurse are on-call 24 hours daily to respond to urgent problems. If needed, the nurse will visit the patient regardless of the hour, making it unnecessary to call 911 for an ambulance to take the patient to hospital emergency department. Most hospice patient problems are readily managed in the comfort of the patient's home with much less patient discomfort and inconvenience.
Certified home health aides (CNAs) – These hospice staff are often the most appreciated members of the hospice team by families. They provide “personal care” to patients by preparing light meals, helping with feeding, light house cleaning, washing and dressing, pet care or gardening. The time the CNAs spend with patients builds great trust, comfort and closeness which patients and families value.
Social worker – Emotional and practical aspects of care can be address by a social worker. Examples of emotional help may include assistance coping with stress, conflict and loss. Practical aspects of social work may include helping families plan for the future, applying for financial assistance, preparing an advance directive or help obtaining services available from community and/or government agencies.
Chaplain – The hospice chaplain is a wonderful hospice team member who does not represent any one religion but is well versed to help patients deal with spiritual issues and concerns regardless of religious beliefs and preferences. She/he is a friend to accompany you in this chapter of your life.
Volunteers – Hospice volunteers are well trained lay people who provide companionship and practical support to patients and families. When availability of family and friends is limited, volunteers can comfort and entertain patients as desired and run limited errands as needed.
Music, massage, etc. – Hospice offers limited additional benefits to patients and families to promote quality of life and to help deal with stress. Kno-Wal-Lin engages the help of local singing groups, harpists and massage therapists for the benefit of families and patients.
Medications needed for the hospice diagnosis are provided at no cost to the patient or family and are delivered right to the patient’s home.
Hospice provides the kind of care that most people want when they need it the most. For further information, please visit the Pen Bay Healthcare website and click on “Kno-Wal-Lin” (www.penbayhealthcare.org/knowallin) or call 594-9561.
Ira Mandel, M.D., MPH is a Palliative Medicine physician and is medical director of Pen Bay Healthcare’s Hospice and Palliative Care program. He provides compassionate care with a team of health professionals who honor the wishes of patients with serious illnesses. His monthly column seeks to inform the public about choices they may wish to consider. Disclaimer: All people described in this column are not actual patients but are derived from many hundreds of patients Dr. Mandel has treated over many years.