Hospice Holidays

marlene L

I became part of the largest home hospice in my area four years ago just after Christmas. I work at night from home and on my own. In addition to calls and visits for various issues that arise, I am also in attendance for any deaths. I do an average of ten death visits per month.

I’ve encountered a myriad of diseases that have incapacitated some of the strongest people. Many hospice patients are cancer sufferers. I also see heart and lung diseases, and failure to thrive in the elderly. Then there are the less common but just as devastating diseases that can afflict younger people from babies to middle age and beyond.

The holidays become an especially challenging time for hospice families. While the joys of the season along with its stresses are felt by most people, they have the added burden of sadness knowing it is the last they will share with their loved one. As each holiday season approaches, I am reminded how losing a family member at this time takes a toll. My own mother was on hospice and passed in my home just before Thanksgiving years ago. I remember the deep feelings of loss and how no one in my family felt like celebrating. The years have tempered the sadness, but grief resurfaces at that time.

One issue I come across is the patient who was spirited until about a week before they pass. These patients can ‘fool’ their loved ones into believing they will persevere for weeks to months. They may not even use our symptom-relieving ‘comfort packs’- that include strong narcotic pain and anti-anxiety medications, until the last few days of their lives.

There is a common desperate phone call that I recognize. One where the family is concerned that the patient is sleeping all day, suddenly cannot walk or is disoriented and hallucinating. Often I hear, “3 days ago they were working in the garden”, or “last week we took her out for a drive”, and “we reminisced yesterday over family photos where he was totally with it”. Losing someone during a reoccurring holiday that will now serve as a reminder of that loss is a heavy load. They ask about visiting the emergency room and getting treatment. They are unable to fathom the sudden change as anything but an acute symptom that needs to be addressed to get back to baseline. While most nursing positions allow nurses to offer hope and treatment to the families, mine leads to the disclosure that the manifestations are normal and expected. The new symptoms most likely signify an advancement of their disease and approaching death.

The realization that their loved one is really going to die, often sooner than they expected, can come as a shock to these families. They must re-evaluate their emotions regarding the expected yet unexpectedly abrupt circumstances. Families may suddenly feel unable to give proper care or to just deal with the situation. It’s akin to when the news of the patient’s terminal diagnosis was revealed. Hopelessness surfaces.

This is where a large part of the definition of nursing is utilized. That is, teaching, listening, and being present for the family and patient. I let them disclose their fears and anxieties without judgment. I explain the usual signs and symptoms of the impending death. We discuss end-of-life support. While hospice is always just a phone call away, it’s the family that has the responsibility of providing the most care. My job at this point is to empower them with knowledge, offer a shoulder to cry on, and validate their feelings- even those they feel are negative towards the patient or situation.

When I make the death visit for these families, I see the positive results of the time spent preparing them. They reach a point of acceptance. I continue to reassure them that there were no deficiencies in their care. I remind them that they followed the patient’s wishes to be home and allowed this great gift.

The key thing about hospice is that the whole family is cared for, not just the patient. A hospice nurse becomes privy to family dynamics in their private homes. It’s intimate. If I can make this time more bearable, inform to empower, and provide a safe place to voice anxieties, I have done my job. Rarely am I able to extend wishes for a happy holiday. Yet these families sacrificed to fulfill the bequest of their dying loved one to spend their last days in the comfort of their home surrounded by family. It is the true meaning of the holidays.

As a hospice nurse, the holidays come with hope and trepidation. I know I will encounter pain and sadness that will mark the season for my patients and their families. Making the process manageable for them is my purpose. Reminding them that their actions mirror the meaning of the holidays is my goal. Hospice families step outside their comfort zone and in doing so can achieve a distinct meaning to giving. They deliver so much more than brightly wrapped presents. In doing so, they receive the peace of mind that they gave the greatest gift of all.

Hospice Holidays

About marlene L

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