Case Study

Profile

Ms. AJ is a 36 year old Jawoyn woman from Katherine. She had a bioprosthetic mitral valve replacement at age 28 at your institution.  She has been lost to follow-up for several years, but has recently been admitted to Katherine hospital with significant breathlessness, small volume haemoptysis, and oedema. She has been transferred to your tertiary cardiac surgery hospital, under the care of the intensive care unit.

 

AJ being Aboriginal profoundly affects all aspects of her progression through the medical system.

Preoperative Course

AJ has advanced rheumatic heart disease. As a child, she lived in accommodation with a large extended family, had no access to running water, nutritious food, or health-care when she was unwell. She had recurrent febrile illnesses, and was unable to access penicillin. Since her first operation, she hasn’t been taking any medications, not even her penicillin prophylaxis. The first 2 times after the operation that she went to see the visiting nurse, and there was no script or supply available.

 

AJ does not speak English well, has low Western educational attainment, and has limited health literacy. The team is not sure how well AJ understands the concept of the circulation of blood, nor the concept of valves facilitating forward flow through the heart. She does not fully understand the importance of taking medications to improve her health. She has limited understanding of the concept of her health deteriorating over time.

 

Access to health care is extremely limited in AJ’s remote NT community. There is no regular doctor or nurse in her community, and the nearest semi-regular clinic is 200km away. She has no regular engagement with health-care services, no access to pharmacy supplies, and INR monitoring is simply not available.

 

For cultural reasons, AJ is not comfortable talking to male doctors, which adds a third level of difficulty in facilitating engaging with health-care (as well as the language and educational barriers, and the lack of services).

 

AJ has three children. She is unsure of whether she would like to have more children with her new partner.

Hospital Planning

AJ is at the end-stages of prosthetic mitral stenosis, and has severe pulmonary hypertension. She presents as an interhospital transfer to ICU, with frank pulmonary oedema. The late-nature of her presentation means her operative risk is significantly higher. She requires optimisation in hospital pre-op, putting her at higher risk of health-care associated infection, and thromboembolism.

 

You discuss at the heart team meeting whether a transcatheter valve-in-valve is an option. You know this is not an evidence-based decision, but are concerned about high-risk redo-sternotomy to implant another tissue valve, which will require even-higher risk surgery to replace in less than 10 years. You wonder if AJ will still be alive, how far into the future you should be planning, and around the ethics of employing an expensive, non-evidenced based treatment with the future in mind, rather than simply doing the redo sternotomy and facing the current problem first. TOE reveals a large LA thrombus, and AJ is ruled out for TMVR, which at least removes some of the ethical dilemma. You fret that the only reason all of this is being considered is because AJ suffered what is an entirely preventable disease.

 

You decide to implant a tissue valve, because of a lack of access to warfarin and INR monitoring, limited health literacy, and uncertainty around family planning.

 

It is difficult to obtain AJ’s consent for her operation. Her Aunty is able to support her, and provide some translation, and you engage the help of the Aboriginal health workers, but there is no official translator who speaks AJ’s dialect. AJ has limited understanding of what is going on, and the risk she is facing. AJ feels more culturally safe with a woman but there is no female doctor on your team. The process feels very paternalistic.

Intra Operative Course

AJ is a redo-sternotomy, her first operation having been for rheumatic mitral stenosis. Her initial operation was difficult and complicated by a takeback for tamponade, and subsequent fungal endocarditis, which was incompletely treated. Last time, AJ self-discharged and caught a bus home. You imagine that communication and frustration were two important problems. The adhesions are dense, to put it mildly, and as you ask for your fourth 4.0 prolene to repair the right atrium, you again curse rheumatic fever as the cause of all this trouble.

 

AJ is morbidly obese. At home, she has limited access to fresh food, and eats whatever becomes available at the only store in town, which is almost universally processed and packaged food. As such, her chest is deep, and access is difficult. Paradoxically, she is nutritionally deficient and iron-deplete. Her starting Hb is 100. Her tissues are generally fragile and oozy. She requires blood transfusions on cardiopulmonary bypass, and achieving haemostasis is difficult.

 Post Operative Course

AJ is in ICU for many days. Even once she is extubated and her inotropic support has been weaned, her mixed venous saturations remain in the 30s. The team reflects that she has probably had a cardiac index less than two for many years, and that it is possible that AJs low mixed venous saturations may simply be her “normal”.

 

A couple of days after she is back on the ward, AJ tells the Aboriginal health workers that she needs to get home to look after her family: she just received a call from her nephew to inform her that AJs elderly grandmother has arrived at their house, and is being palliated with end-stage renal failure.

 

You are unable to examine her wounds due to cultural sensitivities. The female Aboriginal health worker looks at it and tells you that there’s a bit of slough on the wound, but it looks ok. AJ is always asleep at 0700 when you come to round, and declined to take off her blankets or sit up, the first time you turned up and switched the lights on. You’re told in her community, the family would usually stay up until 4 or 5 in the morning sharing stories, and only wake up at midday. Your resident comes back at midday, but you’re stuck in the operating theatre and are unable to review AJ in the same structured way you’re accustomed to.

 

It is apparent that AJ has a strong attachment to Country. She wants to be home. She is always cold in the hospital air-conditioning. She wants to be outside in the fresh air, to see the trees and birds.

AJ stays in hospital an extra 5 days waiting for the first of 2 plane trips and 2 long bus trips that are required to get her home.

Questions

  1. What does culturally safe care look like for this patient?

  2. What are the cultural elements that are impacting on the clinical decision you are making?

  3. What are the risks in not taking into account this patient’s cultural context?