A Hospice Experience

The adult children gathered together at the kitchen table, waiting to learn how to help their mom best.  You see, their mom had recurrent breast cancer.  The continued treatments had taken their toll.  It had come down to continuing treatment and potentially more suffering or choosing quality comfort care at home.  When the nurse from hospice arrived, she wore a smile. She greeted each adult individually, and when she reached their mom, Darcy, she knelt, looked her in the eye, took her hand, and introduced herself.  The nurse stated she was here to learn the patient’s history. She wants to share how hospice can partner with her children to best care for Darcy as her disease progresses without continued treatment.  Darcy had a smile slowly spread across her face and said, “Thank you for being here.  My family has been through a lot, and I think it’s time to be.”

The nurse first asked what the family’s goals were. Then, each family member took their turn, with the consensus being that Darcy was comfortable and pain-free.  The nurse shared those are very reasonable goals. Next, the nurse shared that the entire team from hospice will work together to formulate a plan of care.  The group includes nurses, social workers, chaplains, certified nursing assistants (CNA), volunteers, and the medical director.  The nurse stated this is a fluid plan as it will change as the needs of Darcy change. Next, medications were reviewed and included: blood pressure pills, blood thinner tablets, and some vitamins. Finally, the hospice nurse told the family to expect a package referred to as The Comfort Pack.  When it arrives, please place it in the refrigerator, and on the next nursing visit, the hospice nurse will review it.

The hospice nurse started making weekly visits to assess the changes and needs of her patient, Darcy.  After a few weeks, there was a decline noted.  Darcy was having more difficulty bathing and dressing, eating less, and started to sleep more hours.  The hospice nurse increased her nursing visits to twice a week with a phone call to check-in.  Darcy and her children agreed to the addition of a CNA to help Darcy with bathing and changing her bed linens twice a week. 

Darcy then declined to take some of her medications for her heart condition.  During a nursing visit, the family talked to the hospice nurse and expressed their concern about the drugs their mom did not want to take any longer.  The hospice nurse shared it is Darcy’s choice not to take some or all of her medications.  Darcy was having increased difficulty swallowing, and the decreased pill burden resulted in increased comfort for her.  This information was complex for some of the family members to understand and agree.  The hospice nurse asked if they would be willing to share their feelings with the hospice chaplain.  At first, some of the family members were defensive, stating this wasn’t about religion.  The hospice nurse agreed with them.  The hospice chaplain does so much more than assist with spiritual needs.  Consider the hospice chaplain to be a sounding board.  The hospice nurse encouraged the family to share their feelings about their mom’s current state of health. During that discussion, a potential resolution to their fears may occur.  The family members agreed to give the chaplain a try.

As time progressed, Darcy became increasingly weaker, needing assistance with walking, getting up and down from her chair and bed, and preparing her meals.  Her family increased their time with her and set up a rotating schedule to be with her.   On a chilly Fall morning, one of her daughters entered Darcy’s bedroom and witnessed her breathing rapidly, moaning, and her eyebrows furrowed.  A phone call to hospice quickly followed.  Darcy’s nurse arrived soon after that, assessed her, and reviewed the pain medications she took.  The nurse shared with Darcy’s daughter that the current medication regimen does not control her pain.  The nurse phoned the medical director and reviewed her case.  New orders were received to increase the strength of the Fentanyl patch, morphine liquid, and lorazepam currently being administered. The hospice nurse made a follow-up visit the next day to assess the effectiveness of medication changes.  The pain had started to diminish with no more moaning, and breathing had returned to an average level for her.

Nursing visits were increased to three times a week to assess the effectiveness of the medication changes and the progressive decline of the Darcy.  After a week on the new medication regimen, Darcy’s pain became uncontrolled.  Another call to the medical director.  Updated medication orders included, Fentanyl patch increased to 75mcg, morphine 0.75ml every 2-4 hours, and lorazepam 1mg every 4 hours.  The CNA visits were increased to three times a week to aid the family. In addition, a volunteer was matched to the family and visited once a week for a few hours to sit with Darcy while the adult children ran errands.

Two weeks later, during a nursing visit, a significant decline was noted.  The hospice nurse gathered Darcy’s adult children around.  Darcy is transitioning into an active stage of dying.  Tears spilled from the adult children’s eyes, looks made to one another, some of them fearful looks.  The hospice nurse explained what had occurred and what may change in the coming days.  Darcy had already started engaging less with people around her, her appetite decreased dramatically, she slept 16-18 hours a day, and she needed increasing doses of pain and anxiety medications.  Darcy may now start urinating in her briefs, refuse to eat and drink, attempt to get out of bed when she is unsteady on her feet, start talking to people that have died, and sleep up to 23 hours a day.  The list was not complete of end-of-life signs and symptoms. Nursing visits increased daily to assist the family with the changes to support them and Darcy.  The hospice nurse reviewed medications for sufficient supply.

Darcy slid into unconsciousness in the next few days, and her fluid intake decreased, as did her urine output. As expected, she slept most, if not all, of the days away.  Fortunately, the scheduled doses of the Fentanyl patch, morphine, and lorazepam given around the clock helped keep her breathing, restlessness, and pain away.  At the next nursing visit, Darcy showed some mottling on her feet up to her knees.  The mottling is another sign that the end of life is nearer.  Darcy’s adult children were all present, as well as their spouses and Darcy’s grandchildren.  Darcy’s breathing was slow and intermittent.  All of Darcy’s children took turns holding her hand and sharing some of their best memories with her.  As the hospice nurse stood aside and watched, Darcy’s breathing was now only a couple of times a minute.  The children were watching, as well. 

Then, Darcy took her last breath.