Palliative Care

1. Palliative Care Palliative Care is not about curing; it is about quality of life.

2. Historical Evolution Middle Ages Religious orders established hospices at roads on the way to religious shrines. Served as shelter to the pilgrims, many of whom were travelling to the shrines in order to cure chronic illnesses. XVI - XVIII Century Religious orders offered care to the sick and dying (mostly in Ireland and England).

3. Founder of the modern hospice care. • In 1957 she was a young physician working at St. Joseph’s Hospice, who started studying pain control in patients with advanced cancer. • Pioneered in the regular use of opioid analgesics, given “by the clock”. • This experiment was seen with scepticism until it started to show improvements in the patients’ quality of life. Dame Cicely Saunders

4. In 1967 Doctor Saunders founded St. Christopher’s Hospice in London where she developed a modern model of hospice care. • Multi-disciplinary approach. • Regular use of opioids to control physical pain. • Careful attention to the social, spiritual and psychological aspects.

5. 1970s • New Haven Hospice, Connecticut, began hospice home care in the USA (1974). • Hospices opened across the USA, usually emphasizing home care. 1980s • Patients with advanced AIDS started to receive hospice care. • The first children’s palliative care centre opened in England. • The Cancer Committee of the WHO created a work group responsible for defining some policies regarding pain management and hospice care (1982). • Adoption of the term “palliative care” due to translation difficulties.

6. Definition “Palliative care is an approach that improves the quality of life of patients and their families facing the problem 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.” (WHO, 2002) “Palliative care is the total care of patients whose disease is no longer responsive to curative therapy. This type of care, consisting of comfort measures, is meant to provide a relief of pain and suffering so the patient can die with dignity.” (Bonnie F. Fremgen, Medical Law and Ethics)

7. Incurable illness – curative treatments are no longer efficient Quality of life Patients and their families Relief of suffering Pain Other physical symptoms Psychosocial problems Spiritual problems Die with dignity

8. It is of the most importance that the physicians are certain that the disease is irreversible and incurable, in order to withdraw the curative therapy and start palliative care. • It must be provided an holistic care. This means that the patient must be treated as a whole rather than just the symptoms of the disease. • The approach to the four problems can only be done by a multidisciplinary team (physicians, nurses, social workers, among others). • Families must be supported and helped to face death as a natural process.

9. Pain When a patient is feeling pain, he/she may experience: • Behaviour changes; • Diminished physical functions; • Lack of humour; • Decreased social interaction; • Feelings of impotence.

10. Physical Symptoms • Besides pain, patients often experience other reversible physical symptoms. Therefore, these symptoms must be controlled and treated. • The physician has an obligation to apply an efficient treatment, as long as the patient has so authorised. • Some physical symptoms may be irreversible. In this situation the physician should help the patient to accept and adapt to his/hers new condition.

11. Psychosocial Suffering These problems are not treatable through medicine. Patients, knowing that they are going to die, may feel anguish, anxiety, abandonment and sadness due to various factors: • Fear of pain; • Loss of dignity; • Leaving loved ones and not knowing how they are going to cope; • Financial issues. Patients may also feel like a burden to their families, especially when they are being cared at home.

12. Spiritual Suffering • With death proximity, patients often reflect about their lives. Some regret as they look back but most are proud of what they have achieved. • Many wonder about the meaning of life and of suffering. • Spirituality must not be confused with religion. • Patients going through spiritual suffering do not seek a religious response. Normally, talking to a person of their choice (relative, doctor, nurse, social worker) is helpful. • Most of the times patients do not need answers, they just need to be heard by someone who is not judgemental.

13. Communication • The information about the illness and the ways to manage pain and other symptoms helps patients and their families to fully understand the situation and to cope with it. • Truth-telling and honesty are of central importance. Patients need to rely on their physicians. • A trusting relationship requires openness about what can or cannot be achieved. • Truth is a path that leads to autonomy, informed consent and trust among the physician, the patient and his/hers family. • Hope must be maintained with reasonable expectations as a way of transmitting security to the patient.

14. How Much Truth? • Information in palliative care will be distressing and sad. Inevitably, patients are approaching the end of their lives. • Patients may be confused and weak due to their diseases or/and the analgesics. • Families play a central role, which may raise confidentiality problems. • Truth-telling raises ethical problems, such as: • How much truth? • How must it be told? • When should it be told? • To whom should it be told?

15. Ethical Issues • Communication • Autonomy and decision making • Advanced directives and proxy decision makers • Theory of double effect • Addiction to strong analgesics • Medical futility

16. Autonomy • Keeping the patient the central piece of the decision making process is to respect his/hers autonomy. • In order for the patient to make a decision he/she must be aware of his/hers condition  importance of communication. • The patient must have capacity to understand the therapeutics, so he/she can accept or deny the treatments. • When this capacity is no longer existent, patients’ wishes and autonomy should be respected through advanced directives.

17. Advance Directives • Most honourable way to respect the patient’s wishes, especially when he/she may lack communication skills or decision making capacity. • Way to prevent unwished interventions. • Advance care planning, through a living will and identification of a proxy decision maker, can enable the patient’s wishes to be upheld even when the patient decision making capacity has been lost.

18. Lei n.º 25/2012 • In Portugal, since last year, we have legislation about advance directives. • It is an unilateral written document on which a competent person shares his/hers wishes regarding the accepted and refused health treatments. • The document is valid for a period of five years. It is renewable for an equal period with the confirmation of will of the patient. • The living will can be revoked or modified by the patient at all times. • This document is also appropriate for the patient to choose his/hers proxy decision-maker.

19. Theoryof Double Effect • In cases of severe pain, physicians may have to choose to administrate strong analgesics which will possibly result on the hastening of the dying process. • These analgesics are also addictive. This is another reason why physicians are reluctant on giving the patients such medication. • One of the main goals of palliative care is to diminish pain, therefore physicians should not hesitate on giving strong medication to their patients.

20. Administration of strong painkillers Intended consequence Unintended consequence Hastening death Diminishing pain • The main concern should be about the dignity and well-being of the dying patient. • The principle of double effect allows the use of aggressive drugs even at the risk of hastening death  unintended but accepted consequence.

21. Medical Futility • Medical futility is defined as an intervention that is ineffective 99% of the time or as an intervention that will not enable the achievement of the intended goal of the intervention. • Technology should not be used as an instrument which its only aim is to delay death. • Treatments that are not beneficial to the patient. • Useless interventions must be avoided in all circumstances.

22. Portugal • Lei de Bases dos CuidadosPaliativos (Lei n.º 52/2012). • This law established the right to access palliative care, creating the RedeNacional de CuidadosPaliativos (RNCP). • Previously the palliative care were integrated in the RedeNacional de CuidadosContinuados. • This was a big step towards the diffusion of the access to palliative care throughout the country.

23. Final Ideas • Palliative care accepts death as a natural and inevitable process. • People have the right to live with dignity, even when they are dying (death without suffering).