Palliative home care

Palliative home care supports the quality of life (QOL) of a patient and family as a whole. Team care is an effective method corresponding to the various needs of the patient and family. Cooperation of various types of professions can meet the need for high-quality outpatient medical care. Social work serves as a coordinator of the care team. One of its important tasks in palliative home care is support of the patient discharge procedure from the hospital. Discharge from the hospital must be carried out before the patient's condition worsens. Prompt support of the discharge is indispensable so that the patient may spend substantial time with high QOL at home. Palliative home care means care for the dying. Therefore, spirituality issues are important. Palliative home care must respect and understand the spirituality of the patient and family. The patient can be discharged from the hospital in peace when there is general support for the physical, psycho-social and spiritual needs of both patient and family.     

A case report of a terminally ill patient who died of cancer at home under pain control

Ninety percent of patients we handle at our visiting nurse group are last stage cancer patients. We report a terminally ill cancer patient who died at home under a high dose of powerful opioids to control pain. The patient was a 69-year-old woman with colorectal cancer. She lived together with her husband and their elder son's family. Even though the patient's condition dramatically shifted time to time, we could maintain a good QOL of the patient till her death at home. After the outpatient chemotherapy treatment began, we confirmed the patient's colorectal cancer had spread to her bones. We started using powerful opioids for pain control and the patient was eventually transferred to home hospice care. Then, the patient suffered a self destruction of the cutis metastasis layer and the disease caused broken bones on her left thigh. We however continued on providing home care service because of the patient's strong desire to stay home even if the family's concern as a care giver had multiplied. We increased the frequency of home visits and telephone calls in order to give medical and spiritual support for both the patient and her family. As a result, we could keep the patient's good QOL up to the time of her death. Based on the experiences through taking care of the patient, we strongly felt that the timing of proper guidance for the peaceful death to the family, a communication method or a communication system and telephone call visits were very important, in addition to controlling the condition of illness in order to keep up a good QOL for both the patient and her family.     

Progress of introduction of artificial respirator at home--the knowledge I have gained from a 19 year-old patient requiring a home respiratory management care and through the friendship with his family members

The patient developed right cerebellar hemorrhage at the age of 15 and spent four years at hospital. The patient and the family members had a strong wish to bring the patient back home and the patient was admitted to the hospital to undergo guidance about home medical care. The patient had paralysis of right upper and lower extremities and generalized strong ataxic motion and was under gastric feeding and had underwent tracheotomy to cope with hypoventilation, which required use of an artificial respirator at night hours. Since the patient was still as young as 19, we want to have the patient "go home" as they wanted. Fortunately, the mother who had to play key roles was still young and the parents worked at home. It didn't take long for them to master the techniques though they had various anxieties. It is considered important in the guidance on home medical care to what degrees the caregivers accept the condition of the patient and can imagine the long lasting care at home. We provided assistance while repeatedly interviewing with the patient and family members considering the significance to confirm their willingness and psychological condition. As a result, the patient was discharged from the hospital in two months. Now, two years have passed, and the patient is still cared at home and the possibility of the patient is sought for. The progress is reported here in this article.     

A case with an ovarian cancer patient who could receive anti-cancer therapy and palliative care simultaneously at home through seamless collaboration in healthcare linkage

A palliative care team provides palliative care in the hospital setting.However, palliative care might be discontinued when a patient was switched to an outpatient from an inpatient or when a patient was being transferred to another hospital.In the present work, we report a case who could receive anti-cancer therapy and palliative care simultaneously at home.The case is a 46-year-old woman.She was diagnosed as left ovary cancer in 1990's and underwent an operation followed by chemotherapy. The tumor relapsed and invaded the sigmoid colon in 2000's.She then developed an intestinal obstruction and was hospitalized.After her conditions were stabilized, she was discharged but still needed a high degree of medical interventions. She was introduced to another hospital providing a home palliative care as well as emergency admission.She could fulfill her desire to receive a palliative care and chemotherapy simultaneously at home through this seamless healthcare linkage.It should be insisted that hospital oncologists and home doctors need to acquire the knowledge of palliative care and close cooperation between them is required.It is also important to establish a comprehensive healthcare linkage system in the society.     

Pain control at home in cooperation with hospitals

At present, many patients heavily dependent on medical care live at home. Therefore, the need for pain control at home is increasing. Within the limits of home care, the method used to control pain control is very important. Here we report 2 cases who need more than 1,000 mg of morphine (converted into oral administration). And we introduce our method for pain control at home. Our method is as follows: 1. Before the patient is discharged from the hospital, we go to the hospital and confirm the patient's condition and pain. 2. If necessary, before the patient is discharged from the hospital, we request to change instruments for home care. 3. We select the best way (instruments, circuits, administration) in consideration of the patients' or their families ADL. 4. When we change a route from oral administration to injection, we let the patient enter the hospital temporarily to adjust the quantity of morphine.     

Contribution of the rehabilitation approach for home medical care--a case study of a patient with higher cortical dysfunction

Although the main theme of this meeting is the continuous care process from acute phase to chronic phase, it is also strongly emphasized on rehabilitation medicine. However, most of the patients who really need rehabilitation have not followed such a process. We will show you a patient with traumatic brain injury, who returned home directly from an acute phase hospital, who had difficulties in ADL and QOL. We took initiatives in medical and care services in order to support the patient and his family to alleviate his difficulties in ADL and QOL. Thereafter, he was able to continue living at home with more comfort. We must offer adequate medical rehabilitation and other necessary support providing medical services and welfare before a patient returns home.     

Nursing experience in palliative care at the outpatient clinic

Seven of the 17 patients reported that they were satisfied with the palliative care at our outpatient clinic. A patient's will to stay home, a devoted key person to the patient, procedures such as good pain control and an oral intake were considered to be important factors in palliative care at the outpatient clinic. We should understand that the patient's family attending the outpatient clinic is a part of their important daily life, so we try to make them feel comfortable whenever they come to see us. We should also strive for building more experience in palliative care for patients and their families. Based on our experience, we anticipate that outpatient care will be increased in the future. In the meantime, advanced nursing skills and techniques are needed.     

A case of metastatic colon cancer in which repetition of standard treatment proved effective

In palliative chemotherapy, a focus on palliative treatment is recommended in cases that are unresponsive to multiple drugs. Careful judgment is needed, however, because when treatment is inadequate, cases that are considered to be unresponsive may include some in which chemotherapy would be effective. We treated a patient with metastatic colon cancer who was judged to be unresponsive to multiple drugs at another hospital, yet repetition of standard therapy proved effective. We report this case as an instructive example of the importance of maintaining dose intensity. The patient was a 60-year-old man. Lung metastasis appeared after he had undergone proctectomy and received adjuvant chemotherapy by his previous doctor. Low-dose intensity IFL therapy, FOLFOX4 therapy (once a month), and FOLFIRI therapy (once only) had been performed, but the patient's condition worsened and he was referred to our hospital. This case could not be considered unresponsive to multiple drugs because the treatment had been insufficient, and so we restarted FOLFIRI treatment with the international standard dose and obtained control of the disease. Treatment was then continued, and the patient died 2 years and 11 months after he was first examined at our hospital. Simple palliative treatment alone should not be given unthinkingly when patients are referred for outpatient palliative care. Full consideration of the dosing and schedule is needed.     

The influence of family willingness to home palliative care

In the current state of medical treatment, cancer patients discharged from hospital to home have been increasing. For enforcement of home palliative care, we think that family willingness to care for the patient is very important. We examined how much the willingness of a family to care for the patient influences the enforcement of home palliative care and the factors that influence the willingness of care given by the family. When the family willingness to care for the patient was low, there were significantly lower patient deaths at home. Meanwhile, the length of home care was also significantly short. In fact, there was a tendency to influence the outcome of home palliative care by increasing the willingness to care for the patient by the family when the number of caregivers was high, additional medical treatment given to the patient and a good QOL at the time of discharge. Based on the STAS evaluation result, the willingness to care for the patient by the family was significantly higher when anxiety between the patient and his family is low, understanding of the state of the disease is good and communication between the patient and the family is good. We thought that the willingness to care for the patient provided by the family influences greatly in order to enforce home palliative care to be successful. We also thought that it is important to provide appropriate information to the patient and his family, and to resolve individual patients' problems as well.     

Hospice and palliative care in the outpatient department

In the medical environment, information disclosure to patients and respect of autonomy have spread rapidly. Today, many terminally-ill cancer patients wish to spend as much time at home as possible. In such situations the patient who has been informed that curative treatments are no longer expected to be beneficial can now hope to receive home care and visiting care from hospice/palliative care services. The essential concepts of hospice/palliative care are symptom management, communication, family care and a multidisciplinary approach. These concepts are also important in the outpatient department. In particular, medical staff need to understand and utilize management strategies for common symptoms from which terminally-ill cancer patients suffer (ex. cancer pain, anorexia/fatigue, dyspnea, nausea/vomiting, constipation, hypercalcemia and psychological symptoms). They also need to know how to use continuous subcutaneous infusion for symptom management in the patients last few days. The present paper explains the clinical practices of hospice/palliative care in the outpatient department. Also discussed is support of individual lives so that maximum QOL is provided for patients kept at home.     

Questionnaire survey for doctors in the area of cooporation efforts when a terminal cancer is transformed to home medical care

In order to smoothly transform a terminal cancer patient from hospital to home medical care, we surveyed based on questionnaires to examine doctor's roles of each primary and regional hospitals and its cooperation among the hospitals. We established two types of questionnaires for two groups, a primary doctor group and a regional doctor group, and distributed and collected them. A total of 123 doctors (35 primary doctors and 88 regional doctors) responded out of 185 doctors, and the collection rate was 66.5%. The survey result indicated that there were significant differences among the primary and regional doctors in evaluating patient's family members for understanding of the patients disease at the time of discharge, how to give a treatment to the patient, alleviating patient's disease conditions and a mental support given by doctor to family members from the hospital. Meanwhile, about 70% of regional doctors answered that family members had some sort of anxieties during a night and at the time of emergency to care the patient. It also revealed that about 70% of regional doctors had experienced troubles in coordinating with a primary hospital. On the other hand, 62% of primary doctors answered that they always provided necessary care to the patient at the time of emergency. In providing a safe and a high degree of QOL in home medical care settings, it is important to have specific common purposes among the two groups of doctors and patients. Furthermore, the primary and regional doctors have to be cooperative, specify duty roles when the patient is transformed to home medical care, and to have ways to accomplish mutual common goals for patients.     

Management of home care for the advanced cancer patient from the standpoint of home hospice

We offer home hospice care to patients with bowel obstruction associated with advanced gastrointestinal cancer, who hope to leave hospital and be cared at home, if they understand their condition and if their families also hope to live with the patients, so that the patients can live at home to the last breath. To master various palliative techniques and nursing care services are indispensable to assure home hospice care. In this case, 1. guidance about HPN, 2. guidance about pain control, 3. arrangement of visiting nurse services and 4. application for the long-term care insurance and procurement of the bed and other nursing goods needed to be completed before the discharge from the hospital, and it is important to complete these preparations rapidly in a short period. The 24-hour communication system and appropriate care for new symptoms are the key for successfully shifting to home hospice care. At the final stage, it is important to support families and repeatedly provide guidance for the peaceful death.     

Key issues in death at home

After our facility was first opened, we provided terminal care for one patient with terminal stomach cancer. In this case palliative care, so important in terminal care, and care for the family was insufficient, and in the end we had to abandon the process assuring the kind of death the patient wished for at home. Learning from this experience, we have provided terminal care to about 150 patients based on each patient's outlook on life and view of life and death. These patients have included terminal cancer patients and patients informed of their cancer who chose to coexist with the cancer and live together with their families. At home, the words and facial expressions of the patients and their families are clear expressions of their humanity. At times, such, feelings are also directed frankly and unaffectedly toward us, the visiting nursing staff. When considering the early case in which we were unable to continue home care, we could see various problems: on the part of the medical staff including primary physician and nurses, the welfare service, the patient and family, and neighboring informal social resources. These included problems in informing the patient of his cancer and his remaining days. In home treatment of patients with terminal cancer, death at home assisted by a physician from the same medical facility is not emotionally all it might appear to be. Nurses, for example, do not provide religious comfort; therefore, they can not provide home hospice services. Or so it is said. However, in supporting community home care, there is an exchange between humans and the communication of genuine feelings; thus, the nurturing of warm care makes possible the kind of death the person wishes. In fact, we can not deny that that is the path we are taking. In the present report, we explore the issues that make home terminal care possible from the viewpoint of visiting nurses.     

Essentials for transition of palliative care patients to palliative home care and for management of their cancer pain

Multi-disciplinary team work among visiting doctors, nurses, care managers and pharmacists located close to the patient's home is essential for smooth transition of a palliative care patient from hospital care to palliative home care and should be set up prior to the patient's discharge from the hospital. Palliative home care physicians should have knowledge of the fundamental support by the government to spare excessive cost to the patients. As for cancer pain management, opioid-centered analgesic therapies have lead to better quality home care for patients. In Japan, although oxycodone SRs and fentanyl patches are available besides morphine, there is no rescue opioid other than morphine. On the other hand, some cancer pain refractory to opioids such as neuropathic cancer pain should be carefully treated by adjuvant analgesics in conjunction with non-pharmacological treatments.     

Method for home parenteral nutrition (HPN) at Daikou Sunadabashi Clinic

In recent years many patients who have become heavily dependent on medical care live at home. At Daikou Sunadabashi Clinic, we take care of many patients who have malignant tumors, at their homes. They need many medical treatments, so HPN has become a common practice. Here we show our circumstances of HPN. And we introduce our method for HPN. Our method is as follows: 1. Before the patient is discharged from the hospital, we go to the hospital and confirm the patient's condition. 2. We assess the level of training regarding HPN, and select the best way (instruments, circuits, administration) in consideration of the patients' or their families ADL. 3. We select a visiting nurse station 4. and train the visiting nurse in HPN using our manuals. 5. We use an HPN pump. 6. We select a simple way of infusion and adjust it to the patient's condition. In this way, we use HPN easily at home with the aid of a visiting nurse, visiting pharmacist, families, and us.     

Barriers upon providing assistance with making arrangements for discharging and changing from hospitals while a patient is undergoing cancer therapy

There has been an increase in cancer patient referrals to our palliative care team during a cancer treatment. In order to help an end-of-life stage homecare cancer patient who becomes being depressed and the family being felt restlessness, a fine-tuned response, an early stage of revelation of the disease and treatment are essential to have a long lasting homecare environment. Based on the Basic Plan to Promote Cancer Control Programs, our hospital established a cancer consulting support center and a palliative cancer care team in June 2009, and staffed them with multidisciplinary personnel. With medical staffs involved as a team, we considered a shared decision making repeatedly in compliance with in-patient's wishes for home care. One of the problems we have experienced was that a patient would take a long time for a decision making due to the state of mental depression, even if the patient had an ability to think and evaluate oneself. For a medicinal treatment of cancer patient with the state of depression, steroid, interferon, hypertension drug, female hormone pill, anti-histamine medicine and anti-fungus agent will cause frequent side effects, but they are easy to get rid of the symptoms. It appears that 5-percent of the patients who had steroid administered 10 days ago have a tendency to have a high manifested risk in 40mg/day PURRE- DONIZORO/Japan calculated. In case of medication related depression, the symptom can be rather controlled quickly by a decrease in the amount of medication. On the other hand, there is a possibility that side effects may appear before anti-depression comes to effects in case of an ordinary depression case. And it takes 2-4 weeks for the medicine to be effective. Therefore, amid the cancer patient is being in the state of depression, a decision to transfer the patient for home care environment should be delayed. This is why we ought to investigate it as one of the problems in palliative care. In conclusion, due to a patient's inability to make own decision, or for a home care period to be not shortened, or we fail to make a right timing to for sending the patient to home, a careful daily observation and a fine-tuned response are desired for a sign of depression with the cancer patient.     

Home care of an ALS patient using an artificial respirator

Due to social changes, advancement of medical technology and introduction of home care insurance, it has become a reality that a patient using an artificial respirator could be treated at home. We report specific problems associated with an ALS patient using an artificial respirator through home care support. A 68-year-old male had a back problem in 2001 and developed a sudden difficulty in breathing. Since 2002, the patient was forced to use an artificial respirator, and without taking his informed consent, was treated at home. Primary caregivers are his wife and daughter. The specific problems we identified are (1) patient's caregivers were unnecessary confused due to a lack of coordination between visiting nurses from two hospitals in giving home care treatment direction, (2) the care giver's burden tends to increase as the duration of care is extended because the short-stay facility or transferring system for patient is not well equipped, (3) there is no particular place to ask for assistance in case of an emergency or an established communication method as the patient's disease status will progress. It appears that these identified problems cannot be resolved by one hospital. However, we believe that we have to establish a community-wide home care system as quickly as possible. Meanwhile, it is important to have a nationwide coordination involving government, corporations, and political institutions to make it to be a success.     

The surgeon-patient relationship in advanced illness.

Surgeons are relatively new to palliative care, but there is a growing recognition of the contributions they can and should make. These go as much to the psychosocial support of the patient as they do to the technical aspects of their craft. The same qualities of proactivity and mastery of technique that stand the surgeon in good stead in the operating room can be acquired and mastered to make him or her equally effective in the hitherto nontraditional arenas of palliative care.     

Promotion to home-based care from acute phase hospital - the problems and the role of community cooperation

It has been emphasized that problems with the system and a lack of resources for home-based care were ones to blame for preventing a promotion of home-based care. However, the real big problems appear to be laid on the unconsciousness and lack of knowledge of home-based care by acute phase hospital, functionality of community cooperation and lack of communication with patients. We examined the actual condition of home-based care by questionnaires to the doctors who took a palliative care study session. The response rate was 73.3%(93/127). It appeared that the doctors of acute phase hospital realized and expressed the necessity of home based care and their desire to participate. However, they are deficient in experiences and trainings. In the terminal care period, the patient and family thought that a medical treatment of intravenous drip and infusion was important, though the doctor would not regard such treatment was suitable to the patient. In reality, the patient gets what he wants. With regard to consulting of a future discharge plan, it is desirable to have it done as quickly as possible. However, there were many instances where the decision was made at the last moments: when the treatment was reached at the limit, and when to offer a support to leave the hospital. Therefore, we should strive for a fulfillment of home based care study, training and resources. Furthermore, functional community cooperation is essential for a promotion of home based care.