The tag line for the Plan Well website is ‘to live well and to die well, you need to plan well’. My mother-in-law provided me with a first-hand experience with the need to plan for final death preparations, particularly if you want to stay in your own home. She generally enjoyed a high quality of life despite her advanced age of 96 years and being very frail which made her dependent on the assistance of her husband and mobility devices to get around. Some years ago, I had assisted her in creating her advance medical care plan. She was very clear that, in the event of serious illness, she only wanted comfort measures.
The picture above was taken on July 1, 2019 in front of the home that they lived in for over 50 years. Within a few days of this picture being taken, her health deteriorated. Pain from her degenerating bones was becoming unbearable and she lost her sense of taste and her appetite. She withdrew from previously enjoyed outings and no longer wished to have visitorsⁱ. Almost immediately from when she decided to stop mobilizing, she became house bound and spent most of her time in bed or sitting in a chair, which opened up a whole set of new logistical issues. We consulted home care and a nurse came by and provided a whole list of practical advice (see Table).
ⁱ Subsequently, my wife found an article that aptly characterized these events as the stages people go through when they are dying. The article very much described what my mother-in-law was going through and helped us understand what was happening. See: https://www.healthline.com/health/signs-of-death
- To improve safety in the bathroom and bedroom, check out the following at a local medical supply company:
- A hydraulic lifter to assist her in and out of bathtub
- Toilet seat lift
- Bed frame handles to make it easier for her to get in and out of bed.
- Don’t use wheel chair as walker
- To prevent constipation, try PEG (Restoralax™), not Metamucil
- Take oral nutrition supplements high in protein, 1-2/day.
- Instructions to increase pain killer dose to 4 times a day and get her medication put into blister packs to
- For meal support, check out “Meals on Wheels”
- Consider using Lifeline as a means for her to request assistance when alone
- Occupational therapy consult placed to assess stairs (will take 3 months)
- If further help needed, consider assisted living facilities and she could provide more information later.
In addition, an arrangement was made to provide in-home help with personal assistance in the morning beginning within a few days. However, within of week of this first consultation, she became less mobile and essentially bed-bound. Despite ‘having a plan in place’, my mother-in-law reinforced to me the need to be constantly evaluating and adjusting ‘the plan’ as dictated by the clinical scenario. We requested that her personal care be escalated to 4 times a day. She had no appetite and was now barely eating anything.
As she became progressively weaker, it became more obvious to all that she would not recover from this episode. Furthermore, her pain and symptom management were still very unsatisfactory. Palliative care was consulted. When asked, “Would she be surprised if she died tomorrow?”, she said ‘No’ but rather she wished that she would not wake up the next morning. She was ready to go and she wanted a home death. However, we didn’t know how long this dying phase would actually last. Nevertheless, as a family, we mobilized our resources, talked openly and began planning for a quality finish.
Rather than leave her bedridden in her bedroom staring at the ceiling, we rented a hospital bed that allowed her to sit up more and put this new bed in the front room. My in-laws live across from a beautiful park and have a large window in the front room that gave them a great view of all the comings and goings of the neighborhood, golf course across the street, runners, and other passersby. In past years, my mother-in-law had spent many a day sitting in a chair in front of this window watching what was happening outside, reading the newspaper or watching TV. We figured that allowing her to continue enjoying this view right up to the end would be consistent with a high-quality finish for her. Furniture was rearranged and the new hospital bed placed in the front room so she could see out, but nobody could see in (see picture).
The palliative care doctor recommended a narcotic medication delivered by a skin patch for her pain control with extra tablets for break through pain relief if needed. It seems as soon as the patch was applied, she finally rested comfortably and didn’t require much extra medication for few days. But she had no appetite and ate and drank very little. We knew the end was nigh as a person cannot survive on such little intake. We maintained a constant vigil and administered extra painkillers and sedatives as needed to keep her comfortable. She eventually slipped into a coma and passed away peacefully in her home as requested on July 27th.
From start to finish, it took only 4 weeks. We are full of mixed emotions. We will miss her greatly but have peace knowing that she enjoyed a high quality of life right up till the end and that her suffering was relatively short. It was very exhausting for all of us involved, but we took great meaning and comfort in knowing that we had respected her final wishes. Those wishes could not have been successfully honored if we hadn’t first ascertained her wishes and second, if we didn’t have ‘a plan’ and the support of home care and palliative care teams. I can’t say enough about these other professionals and the significant role they played in helping us accomplish our goal of providing my mother-in-law with a quality finish.
To live well, and to die well at home, you need to plan well!
By Daren Heyland