End of Life Issues and Advance Care Planning in the
Elderly Patient
Mary S. Haras
Mr.
J. is an 83-year-old Caucasian male, who is in the hospital for
exacerbation of congestive heart failure (CHF) and current Stage 5
chronic kidney disease (CKD) with an estimated GFR of 14 ml/minute. His
creatinine was 4.3 mg/dL and has risen since hospital admission. Chief Complaint/History of Present Illness
Mr.
J. was admitted 2 days ago for worsening shortness of breath (SOB) and
lower extremity edema. He describes SOB on minimal exertion, and the
inability to wear shoes due to edema. He has recently been eating a
high sodium diet, and feels that his CHF is getting worse. He denies
prior knowledge of kidney problems, nausea, vomiting or decrease in
urine output. Mr. J. has been on diuretics and blood pressure
medications “for some time.” but notices they have not been working
well lately. Health History
Mr. J. has a greater than 10-year history of hypertension (HTN). He
also has an unknown duration of CHF and is followed by cardiology. He
denies having a myocardial infarction (MI). The family history is
significant for a sister who had renal failure from diabetes. She
was on dialysis and died after several years. Mr. J. denies a history
of diabetes mellitus and renal calculi. He was told that his
kidneys were “diminished” several years ago.
Physical Exam
Mr.
J.’s weight is 164 lbs, up from his usual 128 lbs. His vital signs
are: BP 156/94, P 88, R 24. Pulse oximetry on O2 is 98%.
- Cardiovascular status: Regular rhythm, no murmur or rub detected.
- Lungs: diminished breath sounds bilaterally, crackles at the bases. Wearing O2 at 2L/min via nasal cannula.
- Extremities: 2+ pitting edema bilaterally to the level of his knees. Positive sacral edema and jugular vein distension.
- Abdomen distended, non-tender.
- Foley catheter in place, draining dark yellow urine. Approximately 300 cc of urine was in the bag at time of exam.
- Skin: pale conjunctiva and oral mucosa. Nail beds blanched.
Cue
clustering was done in order to examine the signs and symptoms and
obtain a tentative diagnosis (see Table 1). After review, the
diagnosis of acute renal failure was eliminated because there were more
negating cues than positive ones. CHF and chronic kidney disease were
retained as possible diagnoses (see Table 2).
Plan of Care
- Cardiology to manage CHF exacerbation.
- Lungs: diminished breath sounds bilaterally, crackles at the bases. Wearing O2 at 2L/min via nasal cannula.
- Extremities: 2+ pitting edema bilaterally to the level of his knees. Positive sacral edema and jugular vein distension.
- Abdomen distended, non-tender.
- Foley catheter in place, draining dark yellow urine. Approximately 300 cc of urine was in the bag at time of exam.
- Skin: pale conjunctiva and oral mucosa. Nail beds blanched.
- Hemodialysis via perm-cath if he needs to start dialysis in hospital
- Hemodialysis as an outpatient. Preparations to begin in hospital for permanent vascular access
- Peritoneal dialysis as an outpatient. Preparations to begin in hospital for Tenckhoff catheter placement prior to discharge
- No dialysis. Hospice referral to begin in hospital prior to discharge
- Short
trial of dialysis. Patient may begin dialysis in hospital with a
temporary catheter. Evaluate tolerance over 2-3 months, and re-evaluate
decision to continue at that time. Assess for other complications.
- Discussed issues of quality of life with patient and his readiness to die. Family not available for discussion.
- Discussed usual death from renal failure and role of hospice in managing symptoms and facilitating end-of-life issues.
- Encouraged
patient to talk about past experiences with dialysis and answer
questions he had regarding the changes in treatment since his sister
was on dialysis.
- Discussed care of the dialysis access and potential complications
- Discussed the practical issues of outpatient dialysis:
- Transportation
- Frequency and timing of dialysis schedule
- Proximity of dialysis unit to his residence
- Current living arrangements
- Written
and video information left with patient at bedside to review, and share
with family members. Business card with phone number left if family had
any questions they would like answered.
- Advised
patient to follow up in outpatient office if renal function improved
after treatment and do not require initiation of dialysis at this time.
Discussion
Advance
directives are an important component of end-of-life care, and should
be the starting point of the discussion related to renal replacement
therapy (American Academy of Family Physicians, 2003; Cohen, Germain,
Poppel, Woods & Kjellstrand, 2000; Cohen, Moss, Weisbord &
Germain, 2006; Davison, 2001; Jablonski, 2007).
In 2000, the Renal Physicians Association (RPA) with the American
Society of Nephrology (ASN) published clinical practice guidelines on
shared decision-making in the appropriate initiation of and withdrawal
from dialysis (ASN & RPA, 2000). Shared decision-making is intended
to benefit the patient and family by seeking their active participation
in decisions about their treatment, and honoring their rights. The nine
recommendations incorporate shared decision-making, advance directives,
withholding or withdrawing dialysis, time-limited trials, conflict
resolution, estimating progression, palliative care, informed consent,
and special patient groups.
In 2005, nephrology nursing standards related to palliative and
end-of-life care were established (Burrows-Hudson & Prowant, 2005).
They state that the patient and family will receive guidance with
advance care planning, and that the patient will receive appropriate
pain and symptom management as well as well as psychosocial and
spiritual support throughout the CKD and dying experience. The
guidelines recommend that the nurse review the patient’s readiness for
end-of-life, and assess the patient’s mental, physical, symptom,
psychological, emotional, and treatment history. Patient teaching on
palliative care, the benefit of advance directives, and reinforcement
of the patient/family as the prime decision-maker in the decision to
withdraw from dialysis are key educational components. Most knowledge
about end-of-life planning and advance directives has come from
self-guided study and the nurse’s desire to be fully present for the
patient and family.
Many patients change their minds about initiation of dialysis.
This is often frustrating, and at times difficult, to deal with. Mr.
J.’s initial educational encounter took place in an acute care setting
without family present. He was provided with written information to
share with his son, and asked to call the office if either one had any
further questions. As is quite typical with hospitalized patients, he
went home and did not follow up. He was subsequently re-admitted for
CHF exacerbation. Many patients feel that if they do not make a
decision about dialysis, then it won’t happen. Most still feel quite
well and are not uremic at the time of the discussion. Their kidneys do
not hurt, they are not acutely ill, and they still feel that they are
enjoying their usual state of health. When family members are present,
they will often indicate to the patient how many things have changed
over the past 6 months to one year. Only then do the patients begin to
realize that they have a progressing chronic illness.
No prior relationship existed between the patient and the nurse until
the time of the therapy options discussion, which naturally may have
fostered a certain level of distrust. While Mr. J. was quite
appreciative of the depth of information shared, he did not feel that
dialysis was imminent. It was the nurse’s goal to educate him on the
option of no dialysis as well as what active treatment modalities were
available to him. Discussing advance directives with him in the
hospital included his wishes about resuscitation and code status. He
was informed that dialysis is a life-sustaining measure, and that it
should be considered in his advance directives. He was afforded the
opportunity to talk about family members who were on dialysis, and the
experiences they had. He shared that his sister had been on dialysis,
and that she did not have a good death at the end. He was fearful that
the same fate awaited him. Mr. J. was given the opportunity to ask
questions, and was assured that he could revise his decision about
dialysis at any time. He felt that he had a good quality of life, but
had concerns about transportation issues. He was encouraged to consider
at least a trial of dialysis if he was at all inclined to start.
Mr. J. decided to proceed with the initiation of hemodialysis while an
inpatient on a subsequent admission. He discussed his quality of life
and transportation issues with his son and felt that any obstacles at
this point could be overcome.
Summary
Mr. J. achieved the desired outcome that was the best for him and his
family. It remains to be seen how his trial of dialysis will fare. To
date he is doing well and has not been readmitted to the hospital. The
shift in his opinion regarding what would be the best decision for him
has been significant, an evolutionary process, and followed a
predictable course. When presented early, in a non-emotional situation,
perhaps greater numbers of patients will have advance directives signed
and in place when the decision to start or withdraw from dialysis are
imminent.
Recognizing that advance care planning is one facet of end-of-life
planning will remind the nurse to look at all of the components in
designing a patient plan of care. Further, knowing that this is an
evolutionary process and should be revisited frequently will enable the
nurse to incorporate the understanding that palliative care/hospice
should be offered with dialysis, instead of taking an either/or
approach. The unique issues facing the older adult also need to be
evaluated and discussed with the patient/family. An acknowledgement of
co-morbid conditions, mental status, and ambulatory status will help
guide the nurse in estimating the best possible outcome and success of
initiation of treatment. Nephrology nurses need a constant reminder
that patients can change their minds at any point. As the dialysis
population and number of patients with CKD continue to grow, the
nephrology nurse practitioner and nephrology community are obligated to
revisit and evaluate the success of their personal implementation of
the guidelines that have been so rigorously formulated.
References
American
Academy of Family Physicians. (2003). Recommended curriculum guidelines
for family practice residents. End-of-life care. AAFP Reprint No. 269.�
American Society of Nephrology (ASN) & Renal Physicians Association
(RPA). (2000). Clinical practice guideline on shared decision-making in
the appropriate initiation of and withdrawal from dialysis. Washington,
DC: Renal Physicians Association.
Burrows-Hudson, S., Prowant, B.F. (Eds.). (2005). Nephrology nursing
standards of practice and guidelines for care. Pitman, NJ: American
Nephrology Nurses’ Association.
Cohen, L.M., Germain, M., Poppel, D.M., Woods, A., & Kjellstrand,
C.M. (2000). Dialysis discontinuation and palliative care. American
Journal of Kidney Diseases, 36(1), 140-144.
Cohen, L.M., Moss, A.H., Weisbord, S.D., & Germain, M.J. (2006).
Renal palliative care. Journal of Palliative Medicine, 9(4), 977-992.
Davison, S.N. (2001). Quality end-of-life care in dialysis units. Seminars in Dialysis, 15(1), 41-44.
Jablonski, A. (2007). Level of symptom relief and the need for
palliative care in the hemodialysis population [Electronic Version].
Journal of Hospice and Palliative Nursing, 9(1), 50-58.
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