ANALYSIS:The hospice home care team is a well established entity throughout the State
LOOKING AFTER a relative who is dying at home is a challenging yet rewarding experience. Apart from the inevitable mix of emotions triggered by watching a loved one dying, there is a need to look after the physical needs of someone whose independence is slowly waning.
When asked, most people express a wish to die at home but it is still the case that two-thirds of us die in hospital. Some people with cancer and other end-of-life illnesses die in hospices looked after by health professionals skilled in palliative care.
But the hospice concept has spread beyond the walls of hospice buildings. The hospice home care team is a well established entity throughout the Republic.
A team of doctors, nurses, social workers and others bring palliative care skills to patients in their own homes. In conjunction with the person’s family doctor and the local public health nurse, the home care team help family and friends fulfil the dying person’s wishes.
The Irish Hospice Foundation has been to the fore in promoting hospice care in the Republic. It runs a successful “hospice-friendly hospital” programme which aims to change the culture of care surrounding dying and bereavement in hospitals.
While the hospice philosophy has made it much easier for people to die at home with dignity, certain challenges remain. Not least is the number of healthcare professionals involved. It requires good teamwork and attention to communication to ensure that all goes well.
The introduction of the syringe driver, a device that slowly feeds painkillers, sedatives and other medications into the body, has made care in the last few days of life a lot easier. Rather than worrying about administering medication after a person is no longer able to swallow, this relatively non-invasive approach (there are no big needles going into the person’s vein) ensures a smooth continuation of drugs needed to control pain, nausea and other symptoms. Because it runs for 24 hours, the syringe can be refilled every day, with gradual increases or decreases in drug dosage as required.
But there is a need also to plan for the possible breakthrough of symptoms, especially at night when professional help is at a premium. It is standard practice for a hospice home care team to leave an “emergency pack” of injectable drugs in the person’s home, so that any problems can be speedily dealt with by a visiting doctor or nurse. Hospice teams routinely leave an information letter along with the medication, containing prescribing advice including dosage.
While the days of fearing morphine as a painkiller are long gone, the hospice movement has worked hard over the years to dispel the myth that morphine use hastens death. This has largely been achieved by adopting a rigorous scientific approach based on careful dose calculations.
The ethics of end-of-life care include consideration of the principle of “double effect”. A terminally ill patient may rarely be in such extreme pain that high doses of morphine are needed to relieve their symptoms. The required dose may bring forward a person’s death as well as relieving the pain. This double effect scenario is not considered a legal or ethical problem as long as the primary aim of the doctor is to relieve suffering and not to cause death.