PROBLEMÁTICA EXTERNA

The hierarchical concept of needs proposed by Maslow has been widely used in business and social sciences, but it appears only sparsely in the palliative care literature.

Zalensky and Raspa applied this model to the hospice and palliative care settings finding high similarity with the Cicely Saunders’s concept of “total pain” affecting physical, psychological, social and spiritual components of persons at the end of their lives (Clark 1999).

Self-actualization:

personal journey & growth in illness.

Connection to “Other”, peace, transcendence, closure, generativity

Esteem:

Respect for past and present (infinite) value of the person

Love & belonging:

Love for patient is re-affirmed by family/caregivers despite illness

Safety:

Both physical and emotional Free of fears about death and dying

(choking to death, pain etc.) Physiological:

Biological needs, pain & symptom control, restoring ability to meet basic life needs

(breathing, eating, toileting)

Figure 5: Maslow’s hierarchy adapted to hospice and palliative care. The figure diagrams the dependence on lower needs; the apex of the pyramid suggests that higher needs are less frequently realized.

Adapted from: (Zalenski and Raspa 2006)

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This adaptation leads to imagine that if physical symptoms are not controlled, e.g. a person is in physical pain or experience severe breathlessness, probably emotional, spiritual and social issues will be a minor concern for him or her. But if impeccable symptom control has been achieved, as suggested in the WHO definition of palliative care (W.H.O. 2002), and probably even if this result is obtain in a lower extent than impeccable, other needs will emerge and are to be somehow fulfilled in order to reach the top of the pyramid where self-actualization is located. We know how the loss of many capabilities experienced by people severely affected by long term conditions can affect esteem and love and belongings too (Edmonds et al. 2007b, DH Longterm Conditions NSF 2005).

It is however true that different needs can have different impact on one’s personal quality of life as it is shown in many published experiences (Chio et al. 2004a, Fegg et al. 2005, Kaub-Wittemer et al. 2003, Neudert, Wasner and Borasio 2004). Palliative care needs were explored in patients, lay carers, multi-professional palliative care providers and managerial skate holders in Northern Ireland and the main areas of needs identified were social and psychological support; financial concerns, needs for choice and information. Furthermore participants highlighted the inequity of provision of palliative care for patients with cancer and non cancer diseases.(McIlfatrick 2007) 2.6.3 Palliative care needs and neurodegenerative disorders

Palliative care needs (PCN) can be represented by the unsolved problems faced by people severely affected by advanced incurable diseases and by their families. This concept is strictly related to the definitions of palliative care (W.H.O. 2002), where describing what palliative care is the various needs are used to define the specific concept. PCN are listed as the components of the “total pain” (Richmond 2005) and included in the concept of palliative care outcomes, those outcomes that are to be obtained to improve the PCN(Higginson, I. J. 1997b).

PCN can be classified in:

• Patient needs

o Physical: uncontrolled symptoms, physical limitations due to disability, need for special device to overcome movement limitations, communication impairment, tubes for artificial nutrition or hydration, aids to help breathing like non invasive ventilation, or invasive ventilation, etc.(Addington-Hall, J. et al. 1995, Addington-Hall, J. M.

and Higginson 2001, Albert et al. 2001, Albert et al. 2009, Archibald et al. 1994, Borasio and Oliver 2006, Borgsteede et al. 2009, Chahine, Malik and Davis 2008, Colosimo and Pezzella 2002, Cornish and Mattison 2000, Kristjanson, Aoun and Oldham 2006, Kubler et al. 2005, Lee et al. 2007, Lisak 2001, Maloni 2000, Miller et al. 2009, Miller et al.

1999, Mitsumoto et al. 2005, Moulin 1989, Moulin 1998, Rabkin et al.

2005, Rehman 2000, Rehman 2001, Saleem, Leigh and Higginson 2007, MSCCPG 1998)

o Psychological: emotional, anxiety and depression, coping with disease and losses, information and communication, abandon, fears (Bolmsjo 2001, Boston, Towers and Barnard 2001).

o Spiritual: the meaning of the diseases, relation with faith and spirituality, fear of the death and of the dying process, sense of guilt (Taylor and Herr 2004, Lambert 2006).

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o Social: isolation, economical concerns, loss of job, change in familiar and social roles (Adelman et al. 2004, Aoun and Kristjanson 2004, Chio et al. 2005, Clarke, D. M. et al. 2005, Gallagher, D. and Monroe 2006, Goldstein et al. 1998, Kaub-Wittemer et al. 2003, Love et al. 2005, Edmonds et al. 2007a, Hudson, Toye and Kristjanson 2006, Spliethoff-Kamminga et al. 2003, Cotterell 2008)

o Choices: place of care, place of death, advance care planning (Albert et al. 1999a, Albert et al. 1999b, Bolmsjo and Hermern 2003, Wollin, Yates and Kristjanson 2006, Cotterell 2008, McCluskey 2007)

• Families needs

o Support: practical help, education, financial and working adaptation, social network, the importance of family atmosphere, help for the children and other weak family components etc (Caap-Ahlgren and Dehlin 2002, Seymour et al. 2003).

o Psychological: coping with losses and preparation for the death of the beloved, prevention of complicated-pathological bereavement and survival after the death of the patient (Dawson and Kristjanson 2003, Hughes et al. 2005, Oliver and Gallagher 1998).

o Spiritual: similar to the patients’ ones.

2.6.4 Summary of the patients’ needs

In conclusion of this chapter on the palliative care needs faced by patients severely affected by neurodegenerative conditions and their caregivers, it results that a big amount of research was performed and published providing strong evidence about the presence of these unmet needs.

All subgroups of needs categorised by Maslow’s approach adapted to palliative care, as well as Cicely Saunders’s components of total pain are represented in this population.

SPCS aim at meeting the palliative unmet needs of their users, therefore when such services are to be evaluated the domains to be chosen for the assessment must come from these categories of human needs applied to the advanced stages of the diseases towards the end of life.

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