The right to die at home

A system has been designed to help the chronically ill provide for a dignified death.

hospital bed 88 (photo credit: )
hospital bed 88
(photo credit: )
t age 93, Ria's mother Aliza developed the skin disorder Pemphigoid Bullos. Her entire body, including her ears, nose and mouth were severely affected, causing her excruciating pain and disability. In 2005 she was admitted into one of the major hospitals in the center of the country. Ria felt that the unit was more concerned with the diagnosis of her mother's illness and that the disease - rather than the patient - was treated. A full month of tests was conducted before the disease was finally identified, while attention to symptom control (severe pain and an excruciating need to scratch) was not taken. No medication was administered until a full diagnosis was made. During her two months in hospital, Aliza - who rarely complained - repeatedly asked to be returned home. Ria decided to take her mother home. On release from the hospital, they were referred to her health fund's representative at the hospital. The representative referred them to the home care unit in her area. The dying process of chronically ill geriatric patients is often fraught with severe pain, extreme stress and overwhelming fear. Likewise, the patient's family suffers from acute distress and a sense of helplessness and isolation. "A lack of comprehensive geriatric assessment and treatment causes chronically ill patients and their families undue suffering," says Dr. Israel Berger, a geriatric consultant for the Maccabi Health Service's Home Care Unit in Tel Aviv. Berger explains that limited case management creates avoidable medical complications, while continuous readmittance into hospital creates unnecessary financial strain on the national medical system. Increasingly, healthcare professionals are calling to bring the dying process home. The homecare system helps provide for a death that is free of unnecessary suffering and stress for both patients and their families. A system has been designed to help the chronically ill cope with their illness and provide for a dignified death. Berger speaks of assistance rooted in compassion and understanding, based on the dying person's wishes and directives. Taking up this challenge, Israeli health funds are now operating homecare units that competently deal with the needs of chronically ill patients and their families. Physicians and health fund nurses stationed at hospitals identify patients for referral to the administrative doctor on the homecare team. Frail and housebound patients are the most likely candidates for admittance. Those suffering from a chronic terminal condition - no matter what their age - can also be accepted into a geriatric homecare unit. Admittance is followed by a comprehensive geriatric assessment carried out in the patient's home. The functional status of the patient is assessed according to her/his physical, emotional and mental condition. To be admitted into the unit, a friend or family member must be committed to active involvement in the treatment process. The friend/relative acts as a liaison between the patient and the homecare team and is regarded as the case manager, without whose involvement the care process could collapse. The patient's home must provide sufficient space for the patient, caregiver and all the necessary equipment. Berger notes that efficient operation of the treatment process requires adequate nursing care. A patient who has lost full or partial functioning can receive financial aid for up to 15.5 hours of weekly assisted care from the National Insurance Institute (NII). Private and supplementary insurance can provide additional reimbursements for nursing care. The homecare unit takes over full medical treatment only if the above conditions are in place. The family and team work together in escorting the patient through the dying process within the safe, familiar and comfortable parameters of home. Berger says that the Maccabi Health Service's Tel Aviv homecare system has established a competent team that is able to cope with the needs of the dying patient. Some 400 cases are being managed by the center. Three doctors oversee treatment and are the primary care physicians, while a fourth doctor acts as a geriatric consultant, oversees the home care process and also manages his own caseload. Homecare nurses collect basic information and score patients according to the Functional Independent Measure - an evaluation on which treatment goals are based. The team nurse directs the patient's day-to-day treatment. A physical therapist who complements the team uses pain relief exercises to alleviate discomfort and help improve physical functionality. The team's social worker is the patient's and family's closest assistant and ally. The role of the social worker is to help the patient and his/her family cope emotionally with the difficult stages of chronic illness and the dying process, and ensure that the patient receives all the financial reimbursement due from NII, extended insurance funds, the health fund and private insurance. In cases of extreme poverty, the social worker coordinates with volunteer groups to find solutions. An occupational therapist works on the patient's immediate environment, ensuring that there are no physical obstacles to the treatment. This could include adjusting the height of a bed or installing a shower instead of a bath. The occupational therapist also introduces aids that ease day-to-day living where possible, such as feeding equipment, a computer, or exercise games. A speech therapist and a dietician are also on the team. The bottom line is to help the patient live and attain the maximum possible physical and mental functioning until s/he dies at home. The interdisciplinary team offers a new holistic direction by dealing with the medical, personal and psychological needs of patients and their families during this most difficult last stage of life. From the beginning, Ria felt that the homecare unit was able to compassionately address her mother's medical needs and allay her fears during this traumatic period. Ria applauds the high level of medical care and emotional support that she received from the homecare unit. The doctor assigned to the case promised that the pain would be treated and that, according to her wishes, her mother would remain at home. The doctor and staff were fully available throughout the last weeks of Aliza's life, ensuring that she remained calm and comfortable during that period. Aliza died peacefully at home as was her wish, having suffered a minimum amount of anxiety and pain.