Focus area 5: The best possible quality of life for cancer patients and their next of kin

Cancer treatment can be burdensome and affect physical as well as mental health. Rehabilitation measures that address the patients’ physical, mental and social needs should be integrated into the course of treatment as far as possible.

Many will need help to cope with the psychosocial challenges associated with the disease. It is therefore important that psychosocial support expertise is available in the health service in order to provide good services to cancer patients and their next of kin. The regular GPs often see patients both during and after treatment and will often be in a key position to identify their patients’ need. Hospitals that treat cancer patients should engage in interdisciplinary efforts to ensure good psychosocial follow-up services that can put people in touch with a social worker, chaplain, psychologist, cancer nurse etc.

For many patients, the support from their own network and being met by caring and supportive healthcare professionals at the hospital and in the municipal health service (including their GP) will be enough for them to cope and experience quality of life despite their disease. However, some patients will feel the need for additional mental health services, either at the municipal level or through referral to a psychologist or psychiatrist.

Rehabilitation and other follow-up include assistance and guidance in relation to what the patients themselves can do to improve their situation. There are a number of services offered by or in cooperation with voluntary organisations, patient and user organisations and peer support services, both at the municipal level and in the specialist health service. Many municipal authorities have healthy life centres, learning and coping services, and patients in some hospitals can make use of Vardesenter meeting places and Pusterom sports centres for cancer patients.

It is important that patients diagnosed with cancer are given the opportunity to continue to work during and after cancer treatment if they so wish. Adaptations must be made to allow these patients to return to work.

A great deal of patient care often falls on the next of kin. The care provided by family members and other loved ones constitutes a considerable resources from a societal perspective. However, the next of kin will have their own challenges and needs that must be taken into consideration. Children of patients with serious health problems are particularly vulnerable and at risk. For this reason, the health service is charged with contributing to the provision of necessary information and follow-up to underage children whose next of kin are seriously ill.

Many cancer patients will need palliative treatment at some point. Palliative care should be provided in collaboration between the GP, the specialist health service and the municipal health and care service, and must be tailored to the individual’s needs and wishes. Next of kin will often play an important role in planning palliative treatment.

The need for palliative treatment should be considered throughout the course of the disease, not only when it comes to end of life care. Palliative treatment should be included in ordinary oncological care at the earliest possible stage along with other treatments intended to extend life. Patients can be referred to palliative teams and specialist departments if advanced palliative measures are needed.

According to the World Health Organization’s definition, palliative care is to prevent and alleviate suffering through early identification, thorough mapping and treatment of pain and other problems, whether they be physical, psychological, social or spiritual/existential in nature. All treatment, nursing and care aim to provide the best possible quality of life for patients (adults and children) and their next of kin. The Norwegian action plan for palliative care in cancer care provides recommendations concerning palliative treatment and care for the specialist health service as well as the municipal health and care services.

Ten-year goal 16

All cancer patients who so wish will be able to combine their treatment with work or education

The goal is for all cancer patients who want to continue to work during and after cancer treatment to be supported in doing so, and for cancer patients to be able to combine their treatment with work or education. This is challenging for some, and adaptation will often be required to enable these patients to return to work. It is a goal for more patients of working age to remain active in the labour market during and after cancer treatment and to ensure that adaptations are put in place to allow for this. A study on return to work has been initiated in connection with the EU flagship initiative on better quality of life.

Every year, around 17,000 persons of working age are diagnosed with cancer. A survey conducted by the Norwegian Cancer Society’s user panel shows that 66 percent of people who had a (part-time or full-time) job before being diagnosed with cancer have returned to work after treatment. Surveys also show that many want to live as normally as possible both during and after their treatment, including going to work. This places new demands on the health services and employers as well as society at large.

Information about the rights of and possibilities available to people who want to work despite long-term illness can be found on the Norwegian Labour and Welfare Administration’s (Nav) website.

Ten-year goal 17

Comprehensive support for next of kin will be provided as part of cancer care

Next of kin are an important resource for the patient, but it is important that the health service takes into account that long-term illness requires the patient’s next of kin to be involved. It is therefore a goal for the health and care services to involve and support the next of kin of people with cancer. For next of kin, this means being valued, looked after, listened to and involved insofar as the patient wishes and accepts such involvement.

Once a person has been diagnosed with cancer, that changes the life and situation of both the patient and their next of kin. A great deal of patient care often falls on the next of kin. The care provided by family members and other loved ones constitutes a considerable resource from a societal perspective. However, the next of kin will have their own challenges and needs that must be taken into consideration.

The Norwegian Directorate of Health’s guide on dealing with next of kin describes how to involve and support next of kin, and it provides recommendations for best practice. The guide also describes the rights of next of kin and the duties of the health and care services.

Children of patients with serious health problems are particularly vulnerable and at risk. The health service must therefore help to provide age-appropriate information and follow-up as required to underage children whose next of kin suffer from a serious somatic illness.

Families with a seriously ill child who will need long-term and comprehensive or coordinated health and care services as well as other welfare services, are entitled to a children’s coordinator pursuant to the Patient and User Rights Act Section 2-5.

Many seriously ill cancer patients want to spend as much time as possible at home for as long as possible. This wish should be accommodated through good cooperation between the patient, next of kin and the municipal and specialist health services. Hospital at home could be an option in some cases. Hospital at home is defined as a specialist service provided to persons who are in need of hospital treatment, but whose condition indicates that it is safe for them to receive treatment and follow-up in their own home.