Conservative Care for Patients with Chronic Kidney Disease

Abstract

Comprehensive Conservative kidney care can be defined as planned, holistic, patient centered care for those with stage 5 chronic kidney disease (CKD) that does not involve kidney replacement therapy (KRT). The development of Conservative Care is a response to changing demographics of the end-stage kidney disease (ESKD) population. Many patients are older or highly co-morbid, and may benefit from or choose to have care which avoids the burdens and medicalisation associated with KRT. This chapter describes in detail the key elements and methods of delivery of conservative care for patients with advanced CKD, which may involve a combination of nephrological, care of elderly and palliative input.

Questions

• 1. An 81 year old comes to AKCC with her grandson. She has an eGFR of 12 mL/min/1.73 m² and is of Indian heritage. She manages well, living with a supportive family and has no professional carers. She has not noticed any memory difficulties but no longer does her own banking. Which aspects of assessment may help you guide her through her treatment choices ?

  • A. Clinical frailty score alone

  • B. MoCA alone

  • C. Assessment of patient’s current priorities

  • D. Consideration of rate of GFR decline

  • E. All of the above

  E. Despite the patient managing well without professional carers, a high level of family support may mask mobility or other practical difficulties which might impact on her ability to travel to a dialysis facility. Patient are not always aware of or willing to disclose memory difficulties; the fact that she no longer does her banking may hint at some loss of cognitive function which may impact on her ability to understand complex treatment choices. Her own priorities are vital as recognition that regular trips to see a beloved sister in India several times a year are a top priority may make a relatively constraining treatment such as dialysis less attractive. Her rate of GFR decline will directly impact her estimated survival if she chooses conservative kidney management so is a vital part of early assessment.

• 2. She chooses conservative care. You meet her later when she has developed more symptoms particularly neuropathic pain, poor sleep and low mood. How do you approach this problem.

  • A. Tell her this is not related to her kidneys, and she should see her GP

  • B. Explain it is a normal part of ageing, and she shouldn’t expect to feel as healthy as she did when she was a girl.

  • C. Carry out a comprehensive assessment of her symptoms, and institute a management plan which may involve both pharmacological and non-pharmacological interventions.

  • D. Start gabapentin 300 mg nocte for her neuropathic pain, diazepam 10 mg nocte for her poor sleep, and mirtazapine 15 mg nocte for her low mood.

  • E. Start a buprenorphine patch for her pain

  C. The causes of her pain, poor sleep and low mood may be multifactorial, and may also be inter-related. For example, if she is anxious about her renal prognosis, this may be causing her low mood and poor sleep, and this may increase the intrusiveness of her pain. Careful and thorough history-taking is important to unpick the many aspects of her symptoms.

  Renal patients experience high levels of medication side-effects, due to both polypharmacy, and accumulation of renally-excreted metabolites. Many prefer to “put up with” symptoms in order to reduce pill burden. Non-pharmacological treatments such as sleep hygiene, gentle exercise and counselling for low mood and lethargy, distraction techniques and medicated emollients for pruritis and neuropathic pain, and simply addressing her health-related concerns directly in a gentle and reassuring way, may reduce many of her symptoms to a more manageable intensity.

  GPs often shy away from prescribing in CKD stage 5, and it is the responsibility of the nephrology team to provide guidance on medications which are and are not safe to use in these patients, with appropriate dose reductions where necessary.

  It is true that “she should not expect to feel as healthy as she did when she was a girl”, but it is also unhelpful and does nothing to address her very treatable symptoms. Neither does it foster a good doctor-patient relationship.

  Gabapentin certainly has an important place in the management of neuropathic pain, but 300 mg nocte is too high a starting dose and is likely to lead to over-sedation, which will also increase her falls risk. Prescribing gabapentin in combination with diazepam and mirtazapine, in a naïve patient with CKD stage 5, would be extremely dangerous.

  Buprenorphine is not indicated for first-line management of neuropathic pain.

• 3. Her symptoms improve but 12 months later with an eGFR of 7 mL/min/1.73 m², her family ask for her to be seen urgently as she has “changed her mind and wishes to have dialysis”. How do you approach this request?

  • A. Arrange an urgent dialysis start

  • B. Suggest a trial of dialysis

  • C. Decline the request as she has previously made a choice for to follow a conservative management pathway

  • D. Meet the patient with her family, confirm that she does wish to change her treatment pathway and organise line insertion to start dialysis.

  • E. Meet the patient with her family, and find out what has prompted this change of decision before making any hard-to-reverse changes to her management plan.

  E. It is important to establish why she has changed her mind—have her symptoms worsened, or do her family believe that she will live longer if she chooses to have dialysis? She has attended with her grandson in the past, but he may not be the family’s main decision-maker. Ensure her whole family have a clear understanding of what dialysis can and cannot achieve, and understand that her life expectancy is limited either with or without dialysis.

  Manage any new symptoms, and reassure her that she will not be in any pain or discomfort (fluid overload is particularly difficult for patients to tolerate, and is a frequent trigger for decisions to change modality, but can often be managed well without dialysis).

  Alternatively, she may have chosen CC in the past, to avoid dialysis “unless I really need it”—many patients, particularly those who are older, are extremely keen to avoid upheaval and change in their lives, and may choose to delay dialysis discussions for the time being by choosing conservative management. Others, with executive function impairment, may have been unable to make a decision about modality until a crisis point has been reached. Families will often report “she didn’t really understand what she was agreeing to”. A trial of dialysis may seem a good option but can often extend for several months. Such longer trials can lead to loss of native function so that if she subsequently decides to stop, she may have a shorter life expectancy than if she had not commenced dialysis.

• 4. Three months later, she and her family are happy with Conservative Care, but she and her family still want her to be resuscitated. How do you approach this?

  • A. Accept that it is her right to request CPR, even if it would be futile.

  • B. Seek advice from the hospital legal team about lack of concordance of views in CPR status

  • C. Agree to CPR for her and her family’s peace of mind.

  • D. Explain that CPR is a medical decision, and complete a DNAR order for her.

  • E. Talk to her about her understanding of CPR, and her ideas about end of life in general.

  E. Many people, particularly older patients, worry that agreeing not to be resuscitated means that they will not receive any medical care at all. Reassure her that this is not the case. Explain what is involved in resuscitation, and what CPR can and cannot do. Explore her plans for end of life (preferred place of death, degree of medicalisation, etc), and whether CPR would align with those goals. Help her to complete an ACP document which sets out her wishes. Whilst it is important to be up to date with the legal position in your own health care system, these situations generally reflect communication difficulties, which should be addressed first.

• 5. She confirms that she does not want to be resuscitated, and wishes to die at home with her family. Six months later, you are called by her daughter. She has been in bed for the past two weeks, and has been sleeping for most of the day. Tonight, she has woken and is very restless and agitated. Her daughter is distressed, and asks for help. What do you suggest?

  • A. Bring her in to the Emergency Department for an assessment.

  • B. Tell her daughter it sounds like she needs to start dialysis

  • C. She has chosen supportive care, so is no longer a renal patient—they should call her GP in the morning

  • D. This sounds like terminal agitation, and they need urgent palliative care input to manage her symptoms

  • E. Explain that you will write a referral to the local hospice team.

    D. The history of increasing sleepiness and lethargy suggest that this lady is approaching end of life. She has now developed symptoms (agitation and restlessness), which are not controlled by her current medications, and which are causing her and her family some distress.

    Ideally, the community palliative care team (or local equivalent) would already be involved in her care. If not (perhaps because this deterioration was unanticipated), an urgent referral should be done.

    An emergency home visit needs to be made, this evening, by either the renal team, palliative care team, or family doctor (the most appropriate person will depend on the structure of local services), and a full assessment of her symptoms and care needs should be made. It is not reasonable to leave her in distress until the following day.

    It is also not reasonable ask a family to bring a dying woman to the ED, as there is a high chance of her either dying during the journey, or in a distressing environment such as the busy ED treatment area, instead of at home as she wished.

    For symptoms such as terminal agitation, a combination of either midazolam or haloperidol, plus fentanyl, may be added to a syringe driver to manage her symptoms overnight. A full assessment of her care needs (physical, emotional, spiritual, and family support needs) can be made once the immediate crisis has passed.

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