The Use of Palliative Care in Organ Transplant Patients and End-of-Life Issues

Abstract

Palliative care has been shown to improve quality of life and even prolong life in patients with certain types of malignancy and end-organ failure. Several studies have now demonstrated a beneficial impact of palliative care on the transplant patient. While hospice provides care for patients whose survival is expected to be less than 6 months, palliative care is the specialized care for the patient with serious illness and can be provided at any stage of the disease. All transplant candidates, by definition, qualify. Like transplant medicine, palliative care is also interdisciplinary. It is person/family centered and provides support along with aggressive symptom management. Patients are screened for pain and other physical symptoms as well as for psychosocial and spiritual distress. Palliative care also fosters communication between the patient/family and health-care providers. The patient’s values and principles are elicited so that concordant medical care is provided. Implementing palliative care, sometimes referred to as supportive care early in the disease trajectory has helped transition patients into hospice care once curative options have been exhausted. This chapter will elucidate why patients with organ failure who are candidates for transplantation or patients suffering from complications of transplantation are excellent candidates for palliative care and why a palliative care provider should be part of the transplant interdisciplinary team.

Appendix

Karnofsky Performance Status

100	Normal, no complaints, no evidence of disease
90	Able to carry on normal activity, some minor symptoms of disease
80	Normal activity with effort: some symptoms of disease
70	Able to care for self but unable to carry on normal activity or active work
60	Requires occasional assistance but is able to care for most of personal needs
50	Requires considerable assistance and frequent medical care
40	Disabled: requires special care and assistance
30	Severely disabled: hospitalization is indicated, death not imminent
20	Very sick, hospitalization necessary: active treatment necessary
10	Moribund, fatal processes progressing rapidly
0	Death

Palliative Performance Scale (PPSv2) [87] Reprinted with permission from Victoria Hospice Society , BC, Canada (2001) www.victoriahospice.org

	Ambulation	Activity and evidence of disease	Self-Care	Intake	Conscious level
100%	Full	Normal activity and work. No evidence of disease	Full	Normal	Full
90%	Full	Normal activity and work. Some evidence of disease	Full	Normal	Full
80%	Full	Normal activity with effort. Some evidence of disease	Full	Normal or reduced	Full
70%	Reduced	Unable normal job/work. Significant disease	Full	Normal or reduced	Full
60%	Reduced	Unable hobby/house work. Significant disease	Occasional assistance necessary	Normal or reduced	Full or confusion
50%	Mainly sit/lie	Unable to do any work. Extensive disease	Considerable assistance required	Normal or reduced	Full or confusion
40%	Mainly in bed	Unable to do most activity. Extensive disease	Mainly assistance	Normal or reduced	Full or drowsy +/− confusion
30%	Totally bed bound	Unable to do any activity. Extensive disease	Total care	Normal or reduced	Full or drowsy +/− confusion
20%	Totally bed bound	Unable to do any activity. Extensive disease	Total care	Minimal to sips	Full or drowsy +/− confusion
10%	Totally bed bound	Unable to do any activity. Extensive disease	Total care	Mouth care only	Drowsy or coma +/− confusion
0%	Death	–	–	–	–

Instructions for Use of PPS (See also Definition of Terms)

• 1. PPS scores are determined by reading horizontally at each level to find a “best fit” for the patient which is then assigned as the PPS% score.

• 2. Begin at the left column and read downwards until the appropriate ambulation level is reached, then read across to the next column and downwards again until the activity/evidence of disease is located. These steps are repeated until all five columns are covered before assigning the actual PPS for that patient. In this way, “leftward” columns (columns to the left of any specific column) are “stronger” determinants and generally take precedence over others.

  • Example 1: A patient who spends the majority of the day sitting or lying down due to fatigue from advanced disease and requires considerable assistance to walk even for short distances but who is otherwise fully conscious level with good intake would be scored at PPS 50%.

  • Example 2: A patient who has become paralyzed and quadriplegic requiring total care would be PPS 30%. Although this patient may be placed in a wheelchair (and perhaps seem initially to be at 50%), the score is 30% because he or she would be otherwise totally bed bound due to the disease or complication if it were not for caregivers providing total care including lift/transfer. The patient may have normal intake and full conscious level. Example 3: However, if the patient in example 2 was paraplegic and bed bound but still able to do some self-care such as feed themselves, then the PPS would be higher at 40 or 50% since he or she is not “total care”.

• 3. PPS scores are in 10% increments only. Sometimes, there are several columns easily placed at one level but one or two which seem better at a higher or lower level. One then needs to make a “best fit” decision. Choosing a “half-fit” value of PPS 45%, for example, is not correct. The combination of clinical judgment and “leftward precedence” is used to determine whether 40 or 50% is the more accurate score for that patient.

• 4. PPS may be used for several purposes. First, it is an excellent communication tool for quickly describing a patient’s current functional level. Second, it may have value in criteria for workload assessment or other measurements and comparisons. Finally, it appears to have prognostic value.

Copyright © 2001 Victoria Hospice Society

Definition of Terms for PPS

As noted below, some of the terms have similar meanings with the differences being more readily apparent as one reads horizontally across each row to find an overall “best fit” using all five columns.

• 1. Ambulation

  The items mainly sit/lie, mainly in bed, and totally bed bound are clearly similar. The subtle differences are related to items in the self-care column. For example, “totally bed ‘bound’ at PPS 30% is due to either profound weakness or paralysis such that the patient not only can’t get out of bed but is also unable to do any self-care. The difference between ‘sit/lie’ and ‘bed’ is proportionate to the amount of time the patient is able to sit up vs need to lie down.”

  Reduced ambulation is located at the PPS 70% and PPS 60% level. By using the adjacent column, the reduction of ambulation is tied to inability to carry out their normal job, work occupation or some hobbies or housework activities. The person is still able to walk and transfer on their own but at PPS 60% needs occasional assistance.

• 2. Activity and Extent of disease

  Some, significant, and extensive disease refer to physical and investigative evidence which shows degrees of progression. For example in breast cancer, a local recurrence would imply “some” disease; one or two metastases in the lung or bone would imply “significant” disease, whereas multiple metastases in the lung, bone, liver, brain, hypercalcemia, or other major complications would be “extensive” disease. The extent may also refer to progression of disease despite active treatments. Using PPS in AIDS, “some” may mean the shift from HIV to AIDS, and “significant” implies progression in physical decline, new or difficult symptoms, and laboratory findings with low counts. “Extensive” refers to one or more serious complications with or without continuation of active antiretrovirals, antibiotics, etc.

  The above extent of disease is also judged in context with the ability to maintain one’s work and hobbies or activities. Decline in activity may mean the person still plays golf but reduces from playing 18 holes to 9 holes, or just a par 3, or to backyard putting. People who enjoy walking will gradually reduce the distance covered, although they may continue trying, sometimes even close to death (e.g., trying to walk the halls).

• 3. Self-Care

  Occasional assistance means that most of the time patients are able to transfer out of bed, walk, wash, go to toilet, and eat by their own means but that on occasion (perhaps once daily or a few times weekly) they require minor assistance.

  Considerable assistance means that regularly every day, the patient needs help, usually by one person, to do some of the activities noted above. For example, the person needs help to get to the bathroom but is then able to brush his or her teeth or wash at least hands and face. Food will often need to be cut into edible sizes but the patient is then able to eat of his or her own accord.

  Mainly assistance is a further extension of “considerable.” Using the above example, the patient now needs help getting up but also needs assistance washing his face and shaving, but can usually eat with minimal or no help. This may fluctuate according to fatigue during the day.

  Total care means that the patient is completely unable to eat without help, go to toilet, or do any self-care. Depending on the clinical situation, the patient may or may not be able to chew and swallow food once prepared and fed to him or her.

• 4. Intake

  Changes in intake are quite obvious with normal intake referring to the person’s usual eating habits while healthy. Reduced means any reduction from that and is highly variable according to the unique individual circumstances. Minimal refers to very small amounts, usually pureed or liquid, which are well below nutritional sustenance.

• 5. Conscious Level

  Full consciousness implies full alertness and orientation with good cognitive abilities in various domains of thinking, memory, etc. Confusion is used to denote presence of either delirium or dementia and is a reduced level of consciousness. It may be mild, moderate or severe with multiple possible etiologies. Drowsiness implies either fatigue, drug side effects, delirium, or closeness to death and is sometimes included in the term stupor. Coma in this context is the absence of response to verbal or physical stimuli; some reflexes may or may not remain. The depth of coma may fluctuate throughout a 24-h period.

© Copyright Notice.

The Palliative Performance Scale version 2 (PPSv2) tool is copyright to Victoria Hospice Society and replaces the first PPS published in 1996 [J Pall Care 9(4): 26-32]. It cannot be altered or used in any way other than as intended and described here. Programs may use PPSv2 with appropriate recognition. Available in electronic Word format by email request to edu.hospice@viha.ca

Correspondence should be sent to Director Education and Research, Victoria Hospice Society, 1952 Bay Street, Victoria, BC, V8R 1J8, Canada