Learn About Hospice Care

"You matter because of who you are. You matter to the last moment of your life, and we will do all we can , not only to help you die peacefully, but also to live until you die". Dame Cicely Saunders 

This quotation from Dame Cicely Saunders encapsulates the concept of hospice care. Dame Cicely, in 1967 at London's St. Christopher's Hospice was the first person to use the phrase hospice care in the context of caring for patients who do not have long to live, Hospice care aims to optimize the quality of a terminally ill patient's life, trying to keep him or her as pain free and comfortable as the disease will allow.  

Essentially, hospice care is a way of thinking that understands that death is the natural end to life and accepts it as part of the life process for any living being. The hospice viewpoint of care tries to see that a terminally ill patient lives live to the fullest extent possible, attempting to alleviate symptoms of the disease such as pain and discomfort. Adherents of the hospice standpoint believe that a patient should be among those they care for, rather than ending their days in a hospital; the family of a patient is closely involved in hospice care and relatives are encouraged to participate and be with the patient as much as possible. While hospice care does not aim to prolong life, it does not hasten it either. The focus here is how the patient spends his or her last days of life, not how many days that life can be extended for. Hospice care is offered around the clock every day, either in the patient's residence or in a nursing home, independent hospice or hospital. In the United States of America, hospice care is generally offered at the patient's residence, with a primary caregiver identified from among the relatives of the patient. 

When is hospice care appropriate? Basically, this kind of care is applied when doctors feel that further treatment is futile since the patient is not improving, and when the patient has less than half a year of life left. With hospice care, attempts are made to alleviate pain, discomfort and other symptoms of a serious disease such as cancer. This is called palliative care and the objective of this kind of care is to make life more supportable for the patient and reduce pain as much as possible. Usually, a decision to go in for hospice care at a particular point in time is a joint resolution taken by the patient, his or her immediate relatives and the doctor taking care of the patient. 

When it comes to hospice care, a negative aspect that is seen frequently is the fact that it can be provided at too late a stage to be really helpful. Often, one of those involved in the decision of whether or not to start hospice care feels that to do so would be to admit defeat, to imply that there is nothing left. However, this is a false perception. In the event that the patient responds well and shows signs of improvement, active treatment for the disease can be restarted. Meanwhile, hospice care providers will do their best to make sure the patient is as comfortable and active as possible.  

What Makes Hospice Care Different?

Hospice care is different from other kinds of health care in many ways - let us see what these differences are, in various areas:

Team of Experts in Different Aspects of Patient Care

Hospice care is attended to by various professionals who coordinate their efforts to take the best possible care of the patient. So you will find, in addition to doctors and nurses, a host of others involved in hospice care - therapists, counsellors, trained volunteers, members of the clergy, social workers and home health aides. Thus a patient and his or her relatives receive physical, mental, emotional, spiritual and social sustenance, in addition to the comprehensive palliative care provided to the patient.

Control of Pain and Other Symptoms

This is, of course, a very important part of hospice care. When pain and discomfort are alleviated, the patient is better able to live  a normal life. The hospice care professionals will see that you are experiencing the least possible pain, without medicating you to such an extent that you are not mentally alert. If you are interested in learning more about pain management for terminally ill patients, visit Pain Control: A Guide for People with Cancer and their Families. 

Spiritual Care

This is another area covered by a hospice care programme. At a time like this, spitrual comfort is usually welcomed, and although people have varying faiths and levels of belief, attention to particular spiritual and religious requirements of the patient and his or her relatives is given as part of hospice care. Questions such as the meaning of life and death, bidding adieu to loved ones, or religious activities are covered by an expert in spiritual care. This link will tell you more about spiritual care in a hospice context.  

Home Care or In-Patient Care

Depending on the needs of the patient, hospice care could be offered at home, in a facility provided by the hospice programme, in a facility that offers long term care or in a hospital. You can get in-patient care arranged through the hospice programme, which will still take an active part in you care and in the support of your family. And when it is feasible as far as your health is concerned, you can return to receiving home care. For more details about home hospice care, take a look at Home Care.

Respite Care

The primary caregivers as well as the others involved in looking after you will sometimes require a rest period, since the work involved in looking after a seriously ill person, can be physically as well as emotionally draining. To give caregicvers a much-needed respite, hospice programmes often offer respite care services. You will be looked after in an in-patient set up, either in a hospital, or in the programmes' own in-patient care facilities, while your caregiver has a short holiday, or does something else that needs to be done, or attends a special occasion, or just get rest. This will refresh your caregiver, and allows him or her care for you with renewed energy. Respite care is usually offered by hospice programmes in 5 day interludes for the caregiver.

Family Conferences

Meetings are regularly held with your relatives, so that they know what is going on and what is likely to happen in the near future. At such family conferences, friends and relatives of the patient get a lot of emotional support and a chance to express their feelings and concerns. These meetings can ease the minds of those concerned a lot. 

Bereavement Support

When the patient has succumbed to the illness, the relatives and friends of the patient will find it hard to deal with the grief and loss, even when the details of the illness have been understood and accepted. Bereavement care is part of the services offered by a hospice care programme, and assistance and support is offered by trained volunteers, spiritual and religious professionals, and counsellors, as well as by support groups. These people visit, call and write to the family of the patient and help them with getting care they themselves might require. This kind of care is given to families of patients for about twelve months after they have suffered their loss. If you would like additional information about bereavement care, go to Coping with Grief and Loss, Bereavement Information for Children and Parents. 

Volunteers

In America, there are many people who voluntarily offer their services to a hospice programme. They could be trained in the fields of medicine or health, or they could be laypersons doing administrative work or work collecting money for the programme. 

Personnel Support

The staff who provide the actual hospice care generally have certain personal traits that are ideally suited to their work. They genuinely care about their patients, and are gentle with them. They listen well, too, and this is very important. However, looking after terminally ill people can be very stressful and upsetting, and it is essential for hospice care staff to have a support system of their own. Hospice care staff is trained in the process of death and how to deal with it.

Integrated Services

The team of professionals that looks after you is coordinated and monitored as far as round the clock care is concerned. This interdisciplinary team sees that data about your care is shared among individuals and groups responsible, including doctors, nurses, pharmacists, therapists, psychologists, members of the clergy and funeral professionals.

Where Hospice Care Is Provided

The place in which the care is provided is another aspect of hospice care. Such care services may be provided at the patient's home or in an in-patient set up. 

Generally, cancer patients - over 90% - prefer home hospice care, finding it the better option. 

You should understand the factors involved in the location of the hospice care. Assess both in-patient and home care so that you can make an informed decision to go with a care choice that will be ideal for you as well as for those who are taking care of you. If you need help with such a decision, ask your doctor, discharge planner or social worker in the hospital what the ideal choice would be, with regard to your particular needs.

Hospice Care at Home

Most local home health agencies and autonomous hospice care programmes provide hospice care at home for those who need it. A primary caregiver, generally someone close to the patient, will be identified to look after him or her all the time. The person responsible for direct care of the patient will be supported by a team of medical experts on the staff of the programme - doctors, nurses, pharmacists and so on.

One condition of home hospice care is that there should be someone with the patient at all times. Sometimes this can be difficult to arrange, what with work schedules and normal responsibilities, but a little effort and coordination amongst those close to the patient, a good care roster can be worked out. And the hospice care staff will be regularly seeing the patient and his or relatives and helping out whenever necessary.

Hospice Care at the Patient's Residence 

Usually, a home hospice care provider will have someone go to the patient's residence in order to find out exactly what your requirements are. This is done when the patient joins the hospice programme, and again when patient requirements have to be reassessed. Plans for home hospice care are made with provision for patient requirements and emergencies at any time of the day or night - a nurse will be on call to answer questions on the phone or to come and see the patient if necessary. A Medicare certified hospice will have to make medical services such as those of a doctor, nurse or pharmacist available twenty-four hours a day. If you would like to get additional information about home hospice care, visit Caring for the Patient With Cancer at Home: A Guide for Patients and Families for more details. 

Hospice Programmes in Hospitals

In many hospitals that have facilities for gravely ill persons, a hospice care offering is available. So it is simple for the patient and his or her relatives to get help from experts in care. In certain hospitals, a dedicated hospice unit or department may be found. Some hospitals have a team of care experts who look after patients in various wards of the facility on a visiting basis; other hospitals prefer a system where their own personnel provide hospice care.  

Long Term Care Facilities Offering Hospice Care

There are hospice departments in several places that offer long-term care for patients such as nursing homes. Here, there may be a team of nurses to provide hospice care, or it is possible that such a care facility will have an agreement with a home health agency or with an independent hospice programme such as those based in specific communities. So patients who have no one living with them to look after them and provide care for them, find that long term care facilities offering hospice care are very helpful. 

Independent or Freestanding Hospices

In several areas, there are self-sufficient hospices that are autonomously owned. Such hospices have facilities for residential care of patients, and also offer hospice services at home. Just like hospice programmes that provide hospice care with long-term options, independent hospices are very helpful when someone who needs care has no one living with them who can act as the main caregiver.