Care Demands by Families and Family Healthcare Proxies: A Dilemma for Palliative Care and Hospice Care Staff: Page 2 of 2

May 15, 2013


The terms client-centered care or patient-centered care are used frequently in palliative care and hospice programs and are often incorporated in mission statements and in the statements of values and principles of palliative and hospice care units and programs. The challenge with the concept of “client-centered” care is that it can be interpreted in many different ways when one is attempting to identify the client or patient in the center and becomes more clouded when there are healthcare proxies acting on behalf of the client or patient.6-9 Other challenges include navigating through the complex nature of family dynamics, relationships, and belief systems, all of which can influence patient care.10-13 If the proxies and patient appear to agree on the goals of care, the concept is likely to work relatively well; however, if there is some discordance between what the family members (usually the healthcare proxy) wishes and what the healthcare staff believes the patient would want, developing a care plan can be more challenging. In extreme cases of discordance, it is always possible to take legal steps to remove the healthcare proxy from that role, but this is an extreme step that most healthcare providers and institutions would be loathe to take unless the implications for the patient are profound and might constitute negligence or completely inappropriate—or even harmful—care.

Most of the time, if enough effort goes into explaining the treatment plan to the patient’s family, his or her family members will work with the palliative care or hospice program’s professional staff team to ensure a comfortable death for their relative. Sometimes family members imply that they understand what is meant by end-of-life care within the context of a palliative care or hospice program, yet are not fully prepared for the reality of death and a clinical approach that does not attempt to treat commonly recognized events, such as infection or malnutrition, with anything beyond comfort measures. They also may not fully grasp that the comfort measures generally used include medications that may cause somnolence as a means of easing discomfort, pain, and agitation.

In the first case report, the family members’ request for palliative sedation as the method of treatment was inappropriate considering the level of the patient’s symptoms and our ability to address them adequately using standard palliative care symptom management modalities; these modalities are based on a combination of effective analgesics, such as opiates, and antiemetics are added if the condition or the opiates are causing nausea.1-4 Medications should be used to treat comorbid cardiac and respiratory symptoms, which are often eased by opiates and the judicious use of medications with antidepressant or anti-agitation effects. Sometimes corticosteroids are used to enhance feelings of wellbeing and to decrease symptoms associated with swelling and inflammation, augmenting pain management.

Had there been persistent insistence from the family to use palliative sedation, it might have been necessary to seek a legal remedy, but our explanations were sufficient to help them accept what was being done, and eventually they realized the appropriateness of the treatment plan for their family member. Further, because the patient’s wife was the healthcare proxy and she disagreed with palliative sedation, there was no real fear of any legal action against the unit, as threatened by the son.

Regarding the second case patient, had the family insisted on feeding him despite his recurrent serious aspiration and agitation upon being fed even by his sisters, or had they not allowed us to administer medications for his agitation when he clearly was suffering unnecessarily, we may have had to seek a legal remedy. Fortunately, the family accepted our plan of care and ultimately thanked us for the care we provided despite their initial misgivings and vociferously expressed concern.


The provision of high-quality, compassionate palliative and hospice-based care is the goal for healthcare providers who have chosen to provide end-of-life care as their professional focus. For individuals who combine the philosophy of palliative and hospice care with the care of elders, even greater challenges may occur because of the complex nature of family dynamics, relationships, and belief systems, among other factors, which often influence patient care. It can be challenging for healthcare providers to navigate the many potential minefields when such challenges exist. When successfully navigated, however, the satisfaction that results from achieving a clinically compassionate, caring, and comfortable death for the patient as well as solace for the family are worth all of the effort.


1.     Swart SJ, van der Heide A, van Zuylen L, et al. Considerations of physicians about the depth of palliative sedation at the end of life. CMAJ. 2012;184(7):E360-E366.

2.     Brender E, Burke A, Glass RM. JAMA patient page. Palliative sedation. JAMA. 2005;294(14):1850.

3.     Cooney GA. Palliative sedation: the ethical controversy. Medscape Education. Published 2005. Accessed February 6, 2013.

4.     Maltoni M, Scarpi E, Rosati M, et al. Palliative sedation in end-of-life care and survival: a systematic review. J Clin Oncol. 2012;30(12):1378-1383.

5.     Sasson M, Shvartzman P. Hypodermoclysis: an alternative infusion technique.
Am Fam Physician. 2001;64(9):1575-1579.

6.     Peraino RA. Why patient centered care? Patient Centered Care. Accessed February 6, 2013.

7.     Menzies H. Patient-centred care: it’s about relationships. Social Policy in Ontario. Published July 13, 2011. Accessed February 6, 2013.

8.     Janssen DJ, Spruit MA, Alsemgeest TP, Does JD, Schols JM, Wouters EF. A patient-centred interdisciplinary palliative care programme for end-stage chronic respiratory diseases. Int J Palliat Nurs. 2010;16(4):189-194.

9.     Lloyd-Williams M, Reeve J, Kissane D. Distress in palliative care patients: developing patient-centred approaches to clinical management. Eur J Cancer. 2008;44(8):1133-1138.

10.   Vincent JL. Cultural differences in end-of-life care. Crit Care Med. 2001;29(suppl 2):N52-N55.

11.   Coolen PR. Cultural relevance in end-of-life care. EthnoMed. Published May 1, 2012. Accessed January 6, 2013.

12.   Clayton JM, Hancock KM, Butow PN, et al. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust. 2007;186(suppl 12):S77-S108.

13.   Lopez SA. Honouring cultural diversity at the end of life. Social Work Today. 2007;7(6):36.

The author reports no relevant financial relationships.

Address correspondence to:
Michael Gordon, MD, MSc, FRCPC
Baycrest Geriatric Healthcare System
3560 Bathurst Street
Room 1C24
Toronto, ON
M6A 2E1