Expectations in LTC (Long Term Care): What’s Realistic?

Expectations and goals of care

Our expectations – residents’, families’, and staff’s – should be based on the following two realities:  for almost all of our residents, this will be their final home; and, most elders, in our experience, are concerned more with function and comfort than just living years. Therefore, we have an obligation to keep our residents clean, dry, and both physically and emotionally comfortable, while encouraging as much independence as appropriate  – in other words, to provide TLC (Tender Loving Care).

This TLC is our primary goal of care:  it guides all our actions and also our recommendations such as AND (Allow Natural Death – No CPR) and DNATH (Do Not Admit To Hospital).  (see those handouts)  And although some residents will have a few more specific goals – such as diabetics to keep their sugars controlled – goals can change as the health status of the elder changes.

For example, more than 70% of our residents have some degree of dementia (such as Alzheimer’s), which is a terminal disease.  An elder may be admitted without any evidence of dementia and one of her initial goals of care might be to admit to hospital for repair of a hip fracture if it occurs.  But, suppose she then develops Alzheimer’s type dementia and is also not able to walk independently (read the handout Dementia – what choices do you have).  Since patients with dementia are often made significantly worse by any hospitalization or surgery, the family may then change the goal of care to ‘comfort only’ and therefore request a DNATH order.  

Our goals of care and therefore our expectations need to be realistic for everyone (see the above handouts and those regarding myths about feeding tubes & dehydration, etc.).  No matter where one lives, as a senior ages she can expect a decline in health, usually slowly but occasionally quickly, despite the best of care. 

What are the risks of living in a Long Term Care setting?
The most significant and most obvious include falls, bedsores, and weight loss.

1. Falling – this is the greatest high risk problem a older senior can experience, because it could cause a concussion, a fractured hip or wrist, or simply bruises and skin tears.  Fortunately, most falls result in minimal or no injury. 

What causes falls? The biggest culprit is drugs – too many medications.  That’s the reason why we continually try to reduce the number prescribed (“The fewer pills the better”), and why the government encourages us to do this.  (see the handout Medication Review:  is there Polypharmacy)

Remember that older seniors, regardless whether they are at home or in an institution, often fall because they are aging:  which means weaker, more easily off-balance, less able to recover from a slip.  That’s why we don’t allow throw-rugs, or slippery surfaces, or bed rails (people try to climb over or through them and often break a bone falling).  A new infection, such as bronchitis or bladder, can be enough of a change to their system that they will fall unexpectedly.

Encouraging our residents to participate in daily activities, eat well, and drink lots of fluids, helps to maintain their strength and prevent falls.

We can never eliminate the risk of falling; but, we can minimize it.  (It’s now been shown that ‘bed alarms’ are of no use in preventing falls and can contribute to agitation and delirium.)

2. Bedsores – also known as “Decubitus Ulcers”, these refer to the skin breaking down, usually over a pressure point, such as the heels, the buttock, or the hips.  There are four grades of bedsores, from I (skin redness) to IV (open sore to muscle or bone).

What causes ulcers? Just laying too long in one position can do it and that’s why we try to get folks up and moving if possible, or if ‘bed-bound’ have their positions shifted frequently, and why we use pressure-reducing mattresses on all beds.

Factors which contribute to skin breakdown include:  moisture (urine soaked clothing or sheets, or sweat), poor hygiene, dehydration, poor diet, drugs, lack of movement, poor circulation (such as in diabetes), infections, injury/bruising.

That’s why a shower or sponge-bath regularly is important, followed by a thorough drying.  Although most of those with dementia hate showers, our staff are skilled at getting their cooperation [most of the time!].

Our staff check residents at least every two hours and change the bedding or clothes if wet.  If a resident is incontinent just after the CNA’s rounds and a family member visits and finds their relative wet, please let one of the nurses know so we can change the clothing.

Note:  Studies now show that an ulcer may develop in any facility despite the best care possible.  Especially during their final year of life, residents often become mentally less alert, eat less than usual, start losing weight, and stay in bed more (if they were up before).   Families need to understand that once this ‘downward spiral’ begins, the skin is just one of several organs that is breaking down – it doesn’t indicate bad care!  It means our elder’s life is ending and that she needs extra TLC.  (see the handout Caring for the Dying)

3. Weight Loss – It’s normal to lose some weight when we reach our 70’s and 80’s:  our taste buds aren’t as good, we eat less; we aren’t as active and we lose muscle.  A few elders gain pounds and we actually put them on a diet.  But, for the most part, we have to actively encourage residents to eat and we monitor their intake at every meal.   Strangely enough, most people with dementia lose weight despite eating well.  And, in general we do not restrict our residents’ diets – they can eat whatever they want! 

For some elders, weight loss is a sign of other problems such as depression, uncontrolled diabetes, cancer, emphysema, chronic pain.  When we can, we obviously treat the underlying cause and the weight does stabilize – but not always.

It’s important to recognize that for some who are bedridden, they will begin to lose weight when they refuse to eat.  For these folks, we believe it’s their way of saying “leave me alone, I’m ready to die” – we should respect that.

Sometimes, families ask to have a feeding tube placed because their loved one is losing weight, in the belief that by providing more nutrition artificially we can improve the resident’s life.  The opposite is true!  The research is now very clear that feeding tubes do not improve their quality of life: they don’t improve comfort or reduce the risk of bedsores or infections, and they actually increase the risk of pneumonia.  Thus, we strongly discourage feeding tubes.  (see the handout Myths of Feeding Tubes)

Families should not feel guilty leaving a parent.
Many children of nursing home residents carry tremendous guilt because they are not able to care for their parent at home.  Often, their parent made them promise to never put them in the facility.  But the adult ‘children’ then found they either didn’t have the physical or emotional stamina to provide what was needed, or, didn’t live here.

We have “Family Council” meetings quarterly to discuss all aspects of elder care, including guilt.  Everyone today is busier than our parents’ generation, moves around more, and cannot always do what the parent wants or what would be ideal.  Our facility attempts to be the “almost-as-good-as-home” place  – it’s difficult to do a better job than a dedicated daughter or son at home could do and therefore we appreciate the extra care provided by family members when visiting. 

The stress of being a 24/7 caregiver takes a terrible toll on many adult children and one thing we can definitely offer is some relief to the family in this regard.

Physician/Nurse Practitioner Visits
All residents must be seen every month for the first 90 days, then at least every two months, but, can be seen more often if required.  We encourage practitioners to meet with the resident’s family as often as necessary to review medications, general status, goals of care, etc.  If you would like a meeting, let the nurse know.

Important Decisions for Families
As soon as possible after admission, the following items need to be discussed by the resident, their family, and the staff.  Because most of our residents have a goal of comfort care, we encourage discussions of the following to ensure that we help them meet that goal.   [the staff can provide you with additional information for each topic]

  1. An order for A.N.D. (Allow Natural Death – in other words, do not do CPR when the heart stops).
  2. Stopping as many non-comfort drugs as possible.
  3. Reasons (if any) for an admission to hospital.
  4. Feeding Tubes – when would there be a need for one.
  5. Treating infections with antibiotics –as a resident approaches the end-of-life, are there situations where antibiotics would not improve comfort and only prolong suffering?
  6. Surgery – if a surgical solution to a problem arose, consider both the benefits and the risks to your resident (for example, a resident with Alzheimer’s breaks a hip).

Thank you for trusting us with your elder’s care.

The staff at El Reposo.

ACP 2/16