These questions have been answered by Dr. Riaz-ur-Rehman, Palliative Care physician, trained in Daw House Hospice Flinders University South Australia under the guidance of Prof. Ian Maddocks, Director of the institute. He has served with Prof. Ranjit Mathews Oommens the pioneer of Palliative Care in Malaysia. For Further queries on palliative care please Email at email@example.com.
What is palliative care?
Palliative care is the active total care of a patient who has under gone all forms of curative treatments and is now left with the disease which is beyond cure but the patient still has some time to live. During this period a patient faces a lot of distressing symptoms, which need special attention, and require a highly structured system of care specially tailored according to the individual needs of the patient and his family. The aim of palliative care is to relieve suffering and improve the quality of life for these patients.
It includes the physical aspects of care as well as the emotional, social and spiritual needs of the patient and family. The WHO defines palliative care as “An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual”
What are the goals of palliative care for a patient and their family?
Palliative care not only takes care of the patient but also of the family.
Both patients and their families benefit from palliative care. The goals of palliative care are to develop and coordinate a plan of care that:
• Involves the patient in making decisions about their care.
• Supports the patient and the family in making informed decisions.
• Provides supportive education regarding the disease process.
• Provides relief from pain and other distressing symptoms.
• Incorporates psychological and spiritual aspects of care.
• Develops support systems for the patient/family.
3. What type of treatments are involved in palliative care?
Pain and symptom control:
The palliative care team will identify a patient’s sources of pain and discomfort. These may include problems with breathing, fatigue, depression, insomnia and bowel or bladder dysfunction. The team will provide treatment that can offer relief. These might include medication, massage therapy or relaxation techniques, or other options.
Emotional and spiritual support:
Palliative care focuses on the entire person, not just his or her illness. The team members caring for a patient will address all related social, psychological, emotional or spiritual needs.
The palliative care team will fully explain treatment options to help a patient achieve the best possible quality of life during his/her illness. The patient and their family can determine goals of care that will guide decision-making.
4. Who delivers palliative care?
The palliative care is provided by the interdisciplinary team, which includes doctors, nurses, social workers and the volunteers. The entire team assists the attending physician and the patient/family to formulate a palliative plan of care and support this plan.
5. Where is the palliative care to be delivered?
Patients who have chronic, debilitating, or sometimes life-threatening conditions with an unpredictable prognosis, palliative care may be provided in a hospital based palliative care unit, like the one being established here by the Cancer Care Hospital and Research Centre. To date there is no functioning hospital based palliative care unit in the country. Palliative care can also be provided in a nursing home or in the home settings with the hospice at home program being linked to the cancer care hospital.
6. What is the difference between palliative care and hospice?
Palliative care and hospice are not the same. Although both provide care that emphasizes patient’s goals, relief of pain and suffering, and quality of life, but the hospice focuses on end-of-life care needs.
Palliative care can be of benefit during the course of illness when no defined prognosis is established and the patient is still seeking curative therapies, or after all forms of curative treatment is over and the disease is not responsive to treatment, instead is progressive, while the patient still has some time to live.
Hospice provides care to a patient who has a terminal diagnosis with a life expectancy of about six months or less, and is no longer seeking life-prolonging treatment. Palliative care and hospice often work together, helping patients and families on their journey near the end of life.
After symptoms and pain have been managed and are under control at the palliative care unit in the hospital, the concept is to send the patient at home in his own surroundings with family and friends.
7. Is palliative care only for people with cancer?
No. Palliative care supports all people living with a terminal or life-threatening illness and their families and caregivers. This can include people living with end stage heart, lung, renal and liver disease and conditions such as motor neuron disease, advanced dementia, AIDs, etc.
8. Can I get palliative care if I am at home?
Yes. After symptoms and pain have been managed and are under control at the palliative care unit in the hospital, the concept is to send the patient at home in his own surroundings with family and friends, the patient can remain in contact with the help of a volunteer who resides in the that area. You and your doctor can discuss outpatient palliative care, at the time of admission.
9. What are the facts about morphine?
Morphine is often prescribed during the course of an illness in order to manage pain. This is not a sign that death is close and using morphine to control pain may mean the person can continue to go about the daily routine, and enjoy a life largely free of pain. The appropriate doses of morphine will, in almost all cases, continue to relieve pain right through the course of an illness. Morphine and other opioids are not psychologically addictive when properly prescribed for pain relief. See more detail in FAQs about morphine.
10. What a Volunteer can do in palliative care?
Volunteers in palliative care are an important and valued part of the team. They are a link between the patient at home and the palliative care unit in the hospital; they are supervised by the nurse coordinator and the doctor in the palliative care unit. They offer friendship and practical help that improves the quality of life of adults and children living with a terminal illness and their families. The support of volunteers can make it possible for a person to receive care and to die in peace at home.
11. Who can become a palliative care volunteer?
Palliative care volunteer work is generally for mature individuals, but anyone can volunteer. In this work, life experiences and life skills are enormously beneficial. However, there are no formal qualifications and no previous experience is necessary – only the desire to be of service to palliative care patients and their families/carers and the willingness to learn from those they serve.
Volunteering in palliative care is an opportunity to be involved with people who are at one of the most critical phases of their life.
Volunteers tend to assess their own suitability after reading available information and attending introductory interviews and orientation seminars. Managers of volunteers say that emotional strength grows as volunteers ‘walk the talk’ and support each other along the way.
Working in palliative care is one of the most rewarding volunteer choices anyone can make. Not only does it make a huge difference to the person who is dying and their family, but also to the volunteer’s own life. Volunteers learn to cherish each day, listen deeply and value life as a precious gift.
12. How much time will I have to commit?
Volunteer commitment varies – usually depending upon how much time volunteers can give and the organisation’s requirements. In palliative care volunteers can make their own schedule, depending on what other commitments are, minimum would be once a week for an hour.
Burnouts are also a problem for volunteers, so they can move in and out of their volunteer role. Nurse Coordinators for volunteers know that taking time out for study, holidays, work or family commitments is important; and that encouraging volunteers to pursue other interests while still remaining part of the team, avoids burnout.
13. What training and preparation is required?
Basic orientation and an introductory training are required. The length of this free course and the topics covered are given below. One hour per week for the training is the minimum requirement:
Introduction to palliative care
The palliative care volunteer’s role
• Communication skills
• Responding to loss and grief
• Basic Introduction to illnesses and their symptoms
• Death and dying
• Self care of the volunteer
14. How do I become a palliative care volunteer?
You can contact the project office of Cancer Care Hospital & Research Centre or contact through e- mail at “firstname.lastname@example.org”.
You will then probably be invited to attend an interview. You will learn more about the volunteer system, and the organisation will find the suitable volunteer.